Saturday, February 28, 2015

February 28 - Dear Nicholas Sparks

Dear Mr. Sparks,

The governor of New Mexico proclaimed April 19th a day for CDH!

The Campbell family made this happen for all our kids.
We are doing great gathering proclamations for this year!

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Friday, February 27, 2015

February 27 - Dear Nicholas Sparks

Dear Mr. Sparks,

The Leonard P. Zakim Bunker Hill Memorial Bridge in Boston, Massachusetts will be raising Congenital Diaphragmatic Hernia Awareness on April 19th, 2015 by lighting up blue, pink and yellow.

Photo courtesy of Scott Glovsky


Special thanks to our Awareness Committee and everyone at the MassDOT for taking action against Congenital Diaphragmatic Hernia!

We are so excited to see so many landmarks light up for CDH this year!

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Thursday, February 26, 2015

February 26 - Dear Nicholas Sparks

Dear Mr. Sparks,

We are making great strides in April 19th celebrations and taking action for Congenital Diaphragmatic Hernia!

Photo courtesy of slsc.org
Saint Louis Science Center's James S. McDonnell Planetarium will light up blue, pink and yellow on April 19th in support of Congenital Diaphragmatic Action Day!

Our Missouri State Representative, Laura Henderson, made this happen.

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Wednesday, February 25, 2015

February 25 - Dear Nicholas Sparks

Dear Mr. Sparks,

The governor of Missouri proclaimed April 19th a day to take action to help CDH babies!


This proclamation was requested on behalf of the Henderson family!

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Tuesday, February 24, 2015

February 24 - Dear Nicholas Sparks

Dear Mr. Sparks,

This year we decided not to call April 19th, the "International Day of Congenital Diaphragmatic Hernia Awareness" because raising awareness is only half the battle.

In years past we have done great things like get proclamations and Senate Resolutions, marched in major cities, fundraised for our charity and for hospitals and 100's of families have joined in.  We continue to do those things this year but we changed the name to "Congenital Diaphragmatic Hernia Action Day" to encourage people to not just talk about CDH and post on social media, but to get off-line, go out and actively join in the fight against CDH.  Sure our families are already active in the fight because of what their children go through every single day - but the cause needs us all to get up and fight together if we ever have any chance of stopping this monster birth defect.

My initial vote was to name it "Get off your a$$ and off of Facebook and actually help these babies Day" but that went over like a lead balloon and I was outvoted.  That is a joke.  :)    But that's exactly what we need to do because posting on Facebook to our "friends" who already know about CDH is not enough.   We need to work harder, put ourselves out there, get up and actively fight for all these children.

And it's working!   So many people are participating this year and we are so excited to do so much more for these children! 

We could do even more with a great celebrity spokesperson like you giving these children a louder voice.   We hope these letters touch your heart and you consider doing so.

Sincerely,
Dawn Torrence Williamson
CDH Mom with a Sense of Humor

Monday, February 23, 2015

February 23 - Dear Nicholas Sparks

Dear Mr. Sparks,

Nebraska's governor proclaimed April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!




This proclamation came about in memory of a special little cherub named Liviana Price.

The best part of these proclamations is the awareness these children and families raise. 

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Sunday, February 22, 2015

February 22 - Dear Nicholas Sparks

Dear Mr. Sparks,

The Terminal Tower in Cleveland, Ohio will be raising Congenital Diaphragmatic Hernia Awareness once again on April 19th, 2015 by lighting up blue, pink and yellow.

Special thanks to the McMarlin Family and everyone at the Terminal Tower for taking action against Congenital Diaphragmatic Hernia!

We are so excited to see this building light up again for CDH awareness!

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Saturday, February 21, 2015

February 21 - Dear Nicholas Sparks

Dear Mr. Sparks,

In less than 2 months, we have written you 52 letters, met you in person and raised a whole lot of CDH awareness with this crazy idea of ours to implore you to consider including CDH in one of the plots of one of your amazing novels.

Only 10 months left.  :)

We are persistent and hopeful.

Sincerely,
Dawn Torrence Williamson
Proud Charity President

Friday, February 20, 2015

February 20 - Dear Nicholas Sparks

Dear Mr. Sparks,

It's Day 5 here outside of Raleigh of being snowed/iced in.  

We didn't get that much snow and ice but my house sits on top of a hill with a steep driveway and a neighbor who likes to park directly across the street from the bottom of the driveway.  So that even if we did try to leave, the odds of sliding into his car are high.   To make matters worse, our driveway always takes a minimum 3 extra days to thaw out than everyone else's driveway in the neighborhood because it is in complete shade all day long.  

First world problems, right?

20 years ago, when my son was little, this was my norm.  We didn't leave the house for months during the cold and flu season, except for doctor appointments.  The occupational, physical, speech and sight therapists came to our home.   There were no trips to the store with him in too, no visits with family and friends except for the holidays - if no one was sick.   I was in my early 20's and while my friends were out partying and being kids, I had a kid.  A sick kid at that.  Months on end locked up without the internet or a smart phone in 1994... can you imagine?   I actually read books, painted and watched movies and my son had my undivided attention.   We played, we learned, we were a family.  

Isolation is common for CDH kids, or should be.   These children do not have healthy lungs and a common cold can kill a CDH survivor.   I know I wrote before about the CDH community losing a child to RSV this year.  Now, it's up to 4 children lost to CDH and more hospitalizations from pneumonia than I can keep up with.  

Our CDH families are posting warnings on their doors asking friends and family to stay away.  There are notes on strollers and face masks, asking strangers not to talk to their children out of fear of germs.   Vaccine fears are high for kids of healthy parents these days with all the measles and whooping cough cases in the news.  That fear is multiplied by 100 for CDH parents.   And these families still fight tooth and nail to get everyone to understand how severe CDH is and why their children who look "healthy" need protection.  

Moms and dads now have social media to not feel lonely during the winter.   They can talk to people 24/7 if they want.   I imagine seeing photos of healthy kids playing in the snow must be hard, but our CDH survivors will get there too as they get older and more stable.   There will be snow days and snowmen, laughing with friends, snowball fights.  Someday, not that far away for these kids. 

Honestly, I am grateful for those days of isolation and grateful the internet wasn't around yet.   While it may have seemed hard at the time, those were the best days. 

Sincerely,
Dawn Torrence Williamson
Nostalgic Grieving CDH Mom

Thursday, February 19, 2015

February 19 - Dear Nicholas Sparks (Guest Blogger Shelly Moore)

Dear Nicholas Sparks,

I am writing to you to about one of our family's CDH stories in hopes that you and others may understand just a little what so many families go through, and why we hope you will support CHERUBS in their mission. 


Today, February 19, 2015, my daughter Alicia and I will celebrate our cherub's 5th birthday. And like so many other families we will decorate, have cupcakes, balloons, sing the Happy Birthday song, and talk about all that has happened in the last five years. Unlike many families we also have to be mindful of the rain, as the ground at the cemetery gets very mucky when it rains, and oh, don't forget, we have to get all of this done before dark as there is no lighting in that area, and when it gets dark up there, it gets VERY dark... 


We are the other side of the 50% of the CDH equation, part of the 50% that don't survive... :'(


Our story began in June of 2009. My youngest daughter had been in an on-again / off-again relationship with a boyfriend that was moving toward the off-again phase. She found out she was pregnant around the 4th of July. It was pretty easy to figure out, as she was VERY sick from very early in the pregnancy. A positive pregnancy test pretty much confirmed what we already suspected. An unplanned pregnancy can do 1 of 2 things to a shaky relationship, bring them together or push them apart. Mom and dad could not work things out and he went a different direction in his life. 


The next few months were VERY hard. Alicia already had an enlarged aorta in her heart that required extra monitoring, and she was SO sick with morning sickness that she was loosing weight and could hardly function. By 3 months along she not able to continue working. Things turned from difficult to scary at 7 weeks when she started having severe abdominal pain and we feared a miscarriage. Luckily things were ok, but we got another scare at 11 weeks when a nuchal translucency ultrasound found suspicious findings that suggested there could be a problem with the baby, and the pressure to abort was poured on hot and heavy. All Alicia ever wanted to do was be a mom and with her heart issues this might be her only chance. She was not going to give up on her child! 


They wanted her to do an amnio but she refused. She did agree to a CVS test which showed no abnormalities on the most common areas. It also showed she was carrying a boy... Alicia is half Irish from her late father, almost half Scottish from me, so her Celtic roots run deep. She wanted to give him a good strong Celtic name so she picked the name Jayden. He would need all his strength for what would come later. 


His next ultrasound on October 14th at 17 weeks would put us into a tailspin. I don't know if Alicia or I remember all the events of that day exactly, but like so many other's stories the tech took a long time... going over the same areas multiple times. We were asked to sit in the waiting area, then were taken back and were told they suspected he had CDH. They hoped the defect would be small, but any hope of that was shattered by the next ultrasound in November when they found the defect was severe. We were scared to death for what it might mean for Jayden...




They said his chance of survival was 50% if he did not need a type of heart-lung bypass machine called extra-corporeal membrane oxygenation (ECMO). Sadly because it was severe, ECMO was almost a certainty. Since OHSU did not have ECMO available (it finally became available at OHSU last year) she would have to deliver at a Legacy Emanuel.

The good news was that his heart was ok although squished a bit, and the liver was not in the chest, just his stomach and some intestines. Heart problems or liver involvement would have reduced his survival chances further. He also had cysts in his kidneys which they did not seem to think would be a big concern. Under normal conditions they may not have been, but circumstances were far from normal...


The next few months were a total rollercoaster. Alicia threw a blood clot in her lung the day after Christmas which almost cost her and Jayden's their lives, and as a result had to have injections of blood thinners twice a day for the rest of the way through the pregnancy. Have you ever tried to give your very pregnant adult child a Lovonox shot in the abdomen while trying to avoid monster size stretch marks and try not make it hurt? A mom want to make her child feel better, not cause pain. :-(

Premature labor was a constant battle, gestational diabetes, migraines, worrying about her heart condition, pain in her back and chest from her spine and skeletal problems, and the never ending morning sickness that was relentless all the way through. I am so proud at how hard she fought to get him as close to 40 weeks as she could, to give Jayden every chance for a good start to life. 


At 36 weeks on February 18, 2010, Alicia woke to what seemed like just a little leak. Us women don't like to talk about it but when you are pregnant a baby sitting on a bladder is not your bladder's best friend. She thought that's all it was. It wasn't until our last childbirth class that evening when our very astute teacher recognized the signs of early labor and made us promised to go get it checked out. And we did. Her water was leaking and likely had been all day. We had made it far enough into the pregnancy to have ECMO available if needed. It was not optimal but it would have to do.


All through the night and into the next day she labored, and that afternoon Jayden was born. He wasn't supposed to make any noise as they planned to intubate him right away to prevent him from swallowing air, but he gave us 3 squeaks just because he was going to do things his way. I was supposed to follow him into resuscitation, but for some reason I felt I needed to stay with Alicia. I'm not sure if was divine protection or just a mother's instinct to protect her child, but it kept me from seeing what we late found out was Jayden coding, and them having a hard time getting him back. I have a medical background and have even done CPR on a baby myself before, but could I have stood there and seen my own grandchild coding? I don't know...





He did poorly that first night, and a few hours later what we feared came to pass as ECMO became his only hope for survival. 





Alicia had run into another complication from the epidural with a headache that literally lasted for a week. She missed so much of that first week, unable to stand for more than a few minutes at a time. I tried to juggle caring for Alicia, being at the NICU and work (we were too short staffed for me to use much leave). Exhaustion was a constant companion but it was so worth it as we saw Jayden improve. First his lung inflated and he kept his numbers rock solid for days, enough that he was able to come off ECMO that Friday at a week old! Now to get him to surgery...







He looked SO good that weekend! They started talking surgery by Monday but by that Sunday evening the pulmonary hypertension monster that takes so many of our warriors had reared it's ugly head. Alicia and I watched and waited as he fought so hard. He was on and off the oscillating ventilator. It's a type of ventilation that can help these babies, but they can't do surgery on it. Another week went by and the hope to getting surgery seemed smaller and smaller as he started to swell up. Pulmonary hypertension was pushing those strained kidneys to the breaking point. He swelled even more than he did on ECMO. For every 1 step forward he took 2 back, and by day 19 the decision had to be made to go to kidney dialysis or let him go. His awesome surgeon Dr. Bliss still had faith and so did we. On dialysis he went as the clocked ticked down...










One of the hardest things about being a parent is seeing your child hurting. Sometimes I wish I could go back to when my kids were little and all they needed was a kiss and a hug to make things better. One of those times hit me when I was walking up to the NICU and a Charlie Chaplin song popped into my head..."Smile, though your heart is aching, Smile, even though it's breaking..."

Family and friends came. We hugged. We cried. We prayed. Two days into dialysis, day 21, the nurses asked if she wanted to hold him. We knew it was risky but she hoped he would feel her there and rally. And if it was to be too much, at least her would pass in her loving arms. She decided to get him baptized, just in case. I swore I was going to be strong and brave. Yea. I was bawling all the way through...

He did GREAT through the hold! The next day had had some wet on his diaper. Most parents pray for dry diapers. We prayed they weren't dry. How weird is that, to pray for wet diapers? I know a bunch of CDH parents that have done that... 

There are connections a parent has with their child that defy explanation. No words have to be spoken, they just know. That morning Alicia woke up and could see something had changed and it was not good. She called me to come up and I could tell from her voice it was not good. He was fading and she knew it was time for him to join his grandfather in Heaven. We were so blessed to have some time to take pictures, get footprints and shower him with love. 




On March 14, 2010, Jayden grew his wings. 

He was 23 days old. :'(





The story may have ended here with Alicia left to mourn and the rest of us left to close this chapter and move on but for one thing, CHERUBS. We found CHERUBS just before Jayden was born and they were our rock, our cheerleaders, our support in ways no one else, even family, could be. When Jayden passed they mourned with us. They lifted us in the days after his passing. They understood what we had gone though. We knew we could not let Jayden's story end here. We joined CHERUBS in the battle against CDH and five years later we continue to fight, so hopefully someday soon the answers will be found to stop CDH, once and for all. We owe that to our cherubs survivors, to the memory of the lost, and to all the cherubs yet to come. 





We have held parades, made videos, worked on fundraising contests, met with families, medical staff, staff for our local senators and talked to the media, yet we would gladly have exchanged it all just to be spending this 5th birthday chasing a hyper birthday boy around Chuck E. Cheese. We need to find the answers to stop this from happening. Please help us, help all of our warriors win this battle once and for all!

Shelly Moore
CHERUBS Oregon Co-Rep

CHERUBS Parental Advisory Board (CPAB) volunteer
Grandma to CDH angel Jayden Gilbert
02/19/2010 - 03/14/2010

Wednesday, February 18, 2015

February 18 - Dear Nicholas Sparks (Guest Blogger Phil Carter)

Dear Mr. Sparks,

My name is Phil Carter. This my recollection of having a miracle baby, Casey Carter, born with a Congenital Diaphragmatic Hernia (CDH) 28 years ago.  I was a 38 year old newlywed of about 18 months or so when I found out that I was to be a father.  My wife, Lisa, had an 11 year old son, Joe, from a previous marriage so I was in no hurry to have additional children as we were just getting into being a blended family.  So I never really thought I’d have a natural child of my own. (Miracle 1)

Lisa had some issues during the pregnancy that required 5 sonograms, all of which were described to us as normal, that let us know that we were having a baby girl.   Our doctor recommended a C-Section, so being frugal, I asked if we could have it early so as to get into the current year for tax purposes.  He agreed if “we” would have an amniocentesis, to which I agreed. This turned out to be fortunate as the C-Section was not as stressful on the baby at birth as natural child birth. (Miracle 2) The C-Section went as normal as they are and we delivered a 6 pound baby girl in Carrollton, TX.  There was some activity in the delivery room and the nurses took our baby away pretty fast.  Things happened very fast after that.  The doctor told me our baby was very sick and was being transferred to Children's Hospital and he had contacted our pediatrician who for some reason was in the building next to the hospital. (Miracle 3)

Our pediatrician rode in the ambulance to Children’s Hospital in Dallas.  I had a friend drive me to Children’s and upon my arrival I met my daughter’s surgeon who diagnosed her with CDH.  To my amazement he told me that he and his 2 partners were some of the only doctors in the DFW area that performed the type of surgery that our daughter needed.  He just happened to be on call.  (Miracle 4)

The surgery went as good as it could.  After the surgery the doctor to me that she only had a 5% chance of survival as there was no ECMO machine in the Dallas Fort Worth area.  He told me that most infants who are treated for congenital diaphragmatic hernia will require ECMO (Extracorporeal Membrane Oxygenation) in order to survive.  He said that if she needed the ECMO there was not much hope as it would take too long to get the nearest one (San Antonio) to the hospital.  She survived the night, odds went up to 10%. (Miracle 5)

Over the next week I ran back and forth from Dallas Children’s to Carrollton Hebron hospital relaying information to my wife and marveling over our trooper of a baby in the NICU.  Every day the odds of survival went up.  One of our neighbors happened to be in electronics and had a Betamax Video, which was new in 1986.  He came in and made videos of our baby and took them and a portable TV to the hospital so my wife who was 15 miles away could see her new daughter.  (Miracle 6)

After 11 days, which seemed like months, our daughter was released from Children’s and we brought her home and now 28 years later after getting her BA and moving into her own house we still have a MIRACLE BABY.......Ok, so she is an adult but to me she will always be my “baby”.

Sincerely,
Phil Carter

Tuesday, February 17, 2015

February 17 - Dear Nicholas Sparks (Guest Blogger Lisa Carter)

Dear Mr. Sparks,

I want to share my story of being a mother to a baby girl born with a Congenital Diaphragmatic Hernia (CDH). Every mother's story is as different as our children. This is mine....

My husband and I had been married about 18 months when we found out we were going to be having a baby. I had an 11 year old son from a previous marriage and we had decided that we did not want to have any other children. My husband had no biological children but enjoyed fatherhood with my son.  We were very happy with the size of our family.

I began to wonder if I may be pregnant. Well, I went to the doctor and it was confirmed. I was pregnant. We were not all that happy but I did not have a very positive experience with my first pregnancy. I was a teen mom with my son. I decided that God had blessed us and I was going to enjoy this pregnancy to its fullest. It took my husband until he saw the first sonogram for him to get on board.  It took my son some time to get happy. He didn't mind at all being an only child for 11 years!

I had some problems with a large ovarian cyst during the last few months of my pregnancy and had 5 sonograms during these months. We also found out we were having a little baby girl! We now we were all excited. All seemed to be going well.

The doctor decided it would be best for me to have a repeat C-Section so we scheduled it 2 weeks earlier than my due date. He did require an amniocentesis to make sure her lungs were mature. They were and C-section scheduled. My mom and mother-in-law were also here from NC to be with us when she came into this world. Off to the hospital we went that morning.

Everyone was so excited. I was prepped, epidural in place and off to the delivery room we went. Cassandra "Casey" Carter was born. The doctor held her up so we could see her. By now happy tears were flowing. Her cry seemed different. She had a very squeaky cry. The nurses had swaddled her and brought her over for us to see her. My husband held her for just a minute when they said they needed to take her to the nursery because she was having some respiratory distress. They told us it was probably because she was cold. I didn't think much about it because being a nurse I knew this could be true and they needed to get her warmed up.

After they sent me to recovery my husband went to the nursery to check on Casey. The next thing I remember the phone was ringing at the nurse's station and something told me it was not good. The head nurse came in and told me my new baby girl was very sick and being transferred to Children's Hospital. My daughter was diagnosed with CDH. I completely lost it and then in came my mom, who did not know yet. She wanted to know what was wrong. Then came my husband who yelled at my mom to get out. He was explaining to me what was going on and then came the pediatrician who explained more.

He was telling us that our beautiful newborn baby girl was very, very sick. She only had a 5% chance of survival. He was going to ride in the ambulance with her because they did not want to wait for Children's transport team. I would not be able to see her again before she was transferred as she was too unstable. So off she went and I did not know if I would ever get to see her alive again. One of the best days of my life turned into the worst, a nightmare. My husband followed in his car. My mom stayed with me and a neighbor came and got our son. My mother in law somehow got to Children's to be with my husband. So within 3 hours of birth my daughter was in surgery at another hospital.

She came through her surgery but was still very sick little baby. We had to worry about all kinds of complications but she was still alive. That was what we had to focus on. We took it one day at a time. Since I had a c-section my doctor refused to discharge me so I could go and see her. My husband spent his days at Children's, tried to keep things going at home with our son and both of our mothers and his nights with me. Finally after 6 days, I convinced my doctor to discharge me. He did so with explicit instructions I was to go home. I am sure he knew that was not going to happen, so off to Children's we went. Walking through those doors as a mom is completely different than walking through them as a nurse. As a NICU nurse, you are not only responsible for the medical needs of the babies but also be a support system for the parents.  Now I was a parent standing there next to the warmer needing their support. It gives you a whole new perspective when you become the NICU parent. There lay my beautiful baby girl who was becoming more stable even though she was still on the ventilator.  Her eyes were open and we just looked and stared at each other. All I could do was hold her little hand and keep telling her how much I loved her and that she needed to keep fighting. My husband, both our mothers and nurses said it was time for me to go home. She was stable and everything was looking good.  The nurses would us call if needed.

The next morning when we got there, Casey was off the ventilator and just on oxygen. I got to hold her, rock her and just enjoy my precious baby girl. The next day she was transferred to the regular floor. My mother in law stayed with her at night once she was on the floor. Casey and her "Memom" have a very special bond to this day. They made me go home at night. Casey came home at 11 days old. She is now 28 years old. She has truly been our miracle baby. We were never really told what to expect or complications that may occur. Back in 1986, if CDH babies lived everything doctors felt everything would be fine. Nothing to worry about or so we were told. There is still very little known about the life long effects of CDH on adults. She has had 2 surgeries for bowel obstructions at 18 months and 23 years old.  She has asthma, stomach "issues", dyslexia, and ADD.

It was not until 5 years ago when I started researching effects of CDH on adult survivors, did I find CHERUBS. I was so thankful to find them. Since finding them we have found that even though each baby and family has a different journey they have very similar issues. It has explained so much that she has gone through over the years. I am also thankful that families do not have to take this journey alone any more. Through CHERUBS families have a support system and other parents that totally understand.

Sincerely,
Lisa Carter

Monday, February 16, 2015

February 16 - Dear Nicholas Sparks

Dear Mr. Sparks,

It's an icy Monday here in North Carolina and we're back to work!   We have so many things going on and so many things still to wrap up from last week.

Tonight, I'd like to tell you about all the families who have been struck by CDH more than once.   It's not common (just 2%) but it happens.  

We have had 3 Board Members who had 2 children born with CDH.  We have several families with 3 children who were born with CDH.  We have families who have parent and child, cousins, grandparent and child and aunts and uncles who all had CDH.

You'd think this would make us assume that CDH is genetic, right?   Possibly.  Probably.  But we still do not know yet.  

97% of CDH families only have 1 member with CDH.  

We still do not know what causes Congenital Diaphragmatic Hernia.   There are some great researchers working on finding answers but funds are low.   Just like funds for family services are low.   Funds are low because awareness is low.  People do not donate to things they have never heard of.

And while those researchers are still trying to find the cause quickly, 3 babies are still dying every day from CDH.   2 families will be struck again by CDH this year.   1600 babies will fight CDH.

Right now, we have 1 family who has twin baby girls who are both fighting CDH.  

This has to stop.

Please Mr. Sparks, help us to stop CDH.

Sincerely,
Dawn Torrence Williamson
Frustrated CDH Mom

Sunday, February 15, 2015

February 15 - Dear Nicholas Sparks

Dear Mr. Sparks,

None of our accomplishments the past 20 years would be possible without donors and without the hard and dedicated work of all the many, many people who volunteered their time, talent and love to our charity over the years. 




• Adzick, N. Scott MD
• Aigner, Kristin
• Alessandrini, Rachele
• Andrea Martin
• Andrus, Christi
• Arce, Fer
• Baldwin, Dave
• Ball, Somer
• Barry, Ashley
• Baxter, Lisa
• Bennett, Debbie
• Blake, Mary
• Blake, Mick
• Blakeley, Debbie
• Bloomfield, Brynna
• Bold, Krista
• Bradley, Amber
• Brogdon, Lynne
• Bryant, Hope
• Burchell, Zoe
• Burton, Cheryl
• Burton, Elizabeth
• Burton, Stephanie
• Button, Jean
• Byington, Kimberly
• Cadwell, Heidi
• Cain, Kenneth
• Campbell, Jessica
• Campbell, Lauren
• Campsey, Penny
• Cappola, Gina
• Carter, Cassandra
• Carter, Lisa
• Cassese, Charlene
• Cassese, John
• Chamberlain, Kerrie
• Cheney, Leigh
• Chester, Shanon
• Clark, Melissa
• Clements, Tonya
• Cole, Carol Lynne
• Collins, Cindy
• Collins, Trish
• Colvin, Nicolle
• Coon, Jill
• Crawford, Janice
• Crawford, Kate
• Crow, Carol
• Crow, Danny
• Culwell, Michael
• Cummings, Jessica
• Cuomo, Jennifer
• Daughtry, Joanna
• Davis, Jeannette
• Dean, Amanda
• DeForge, Tina
• DeMercurio, Shirley
• Deprest, Jan MD PhD
• Deskins, Sarah
• Dickerson, Dodie
• Dickinson, Jennifer
• Dinay Everett, Stacy
• Doades, Kimberly
• Donahoe, Patricia MD
• Donahue, Lea
• Donahue, Ray
• Dowdy, Joseph
• Doyle-Propst, Elizabeth
• Dulier, Cindy
• Dunn, Kathleen
• Eaken, Brenda
• Easley, Donna
• Echelbarger, Molly
• Erazmus, Vicki
• Evans, Shelly
• Ezernack, Sheila
• Falkinham, Rebecca
• Fiorillo, Toni
• Fisher, Erin
• Fishgrab, Beth
• Flowers, Rhonda
• Flynn, Shannon
• Forney, Heidi
• Franklin Amlin, Sherry
• Fuentes, SanJuanita
• Fulk, Mark
• Gebow, Georgia
• Gibson, Jill
• Gilbert, Alicia
• Girimonte, Rebecca
• Glennie, Melissa
• Glover, Brandee
• Green, Freedom
• Green-Krist, Kelly
• Grubb, Susan
• Haines, Dawna
• Halbeisen, Jolene
• Hall, Brandon
• Hall, Tara
• Halley, Dawn
• Hammer, Rikke
• Harrington, Chelsea
• Harrington, Tim
• Harris, Lisa
• Harrison, Michael MD
• Hartigan, Collette
• Havenstein, Greg
• Heaton, Tova
• Henderson, Laura
• Hendricks, Rebecca
• Hennebury, Tara
• Hensley, Josh
• Hess, Kara
• Hill, Jody
• Hodson, Nikki
• Holt, Karla
• Hoskins, Renata
• Hosmer, Michelle
• Houle, Patricia
• Howard, Elizabeth
• Howard, Karen
• Howie, Tara
• Huether, Michele
• Hunt, Jade
• Hurley, Kacy
• Hutchinson, Vanessa
• Jaburg, Brienna
• Jackson, Ashley
• Jacob, Liz
• Jacobs, Tari
• Jenkins, Karen
• Jul, Rikke
• Kaleleiki, Laura
• Kara Gleeson
• Kastner, Anne Marie
• Katz, Avia MD
• Kays, David MD
• Kelly, Shana
• Kessner, Danielle
• King, Rachel RN
• Knott, Sharon
• Kostmayer, Shereen
• Kramer, Megan
• Kyle, Mikkel
• Lally, Kevin, MD MS
• Landers, Tracy
• Lane, Brenda
• Lane, Kevin
• Langer, Jacob, MD, FRCS(S)
• Lansdon, Marion
• Larrison, Melissa
• Lehmann, Laurelle
• Lenhart, Scott
• Lichtenstein, Annette
• Logozzo, Angela
• Logsdon, Tami
• Longman, Karen
• Lopez, Elizabeth
• Losty, Paul MD
• Maher, Clair
• Marchesseault, Marie
• Martin, Kristin
• Massie, Grace
• Matthews, Dawnn
• McCafferty, Ashley
• McCue, Dana
• McGilberry , DeAnn
• McGrath, Tina
• McHan, Pamela
• McLuckie, Amanda
• McPeters, Steadman
• McVey, Dawn
• Meats, Tracy
• Meherg, Teresa
• Meyer, Tracy
• Miller, Jason
• Miller, Troy
• Milliner, Faith
• Moats, Elaine
• Mohr, Cindy
• Moore, Shelly
• Morse, Teri
• Mourtsen, Debbie
• Munson, Sharon
• Myers, Karen
• Napers, Karol
• Naus, Niki
• Nava, Corin
• Nava, Jeanne
• Nelles, Suellen
• Nelson, Tim
• Noel, Holly
• Olivarez, Stephanie
• Ore, Grace
• Owen, Amanda
• Parker, Daphne
• Parsons, Melanie
• Partin, Deeshia
• Paulsen, Aubrey
• Payne, Elizabeth
• Pehrson, Heidi
• Peterson, Ann
• Petty, Wendy
• Picerillo, Valerie
• Porter, Corrine
• Prudhomme, Alexis
• Pruitt, Pamela
• Puri, Prem, MS, FACS
• Rademarker, Amy
• Rao, Malini
• Retterer, Clair
• Retterer, Dave
• Rhodes, Peggy
• Rice, Henry MD
• Rodi, Jennifer
• Rodriguez, Isabel
• Roepcke, Paula
• Rogers, Michelle
• Rogula, Kate
• Rowan, Jamie
• Rubenstein, Neil
• Rupe, Tonya
• Salzman, Christi
• Sandoval, Cheryl
• Sarver, Nicole
• Schlueter, Amy
• Schmaltz, Jessica
• Serkland, Victoria
• Silverman, Darlene
• Sincavage, Tammy
• Slavin, Brenda
• Small, Matt
• Spohr, Tammy
• Stembler, Christina
• Stevenson, Cara
• Stiner, Kristen
• Stolz, Donna
• Swanson, Amanda
• Switzer, Kimberly
• Taborn-Moses, Jacquetta
• Taylor, Christine
• Taylor, Lesli A., MD
• Tenney, Jennifer
• Thibeau, Lisa
• Tolley, Stephanie
• Tomczyk, Laura
• Torrence, Jeremy
• Toth, Judi
• Trask, Abigail
• Tucker, Sophia
• Tunnell, Julie
• Van Horne, Curtis
• Van Rillaer, Gemma
• Vanesko, Jeff
• Vanesko, Sandy
• Wagner, Barbara
• Ward, Lauren
• Warr, Tammy
• Wasik, Jennifer
• Weaver, Christine
• Webster, Laura
• Weedon, Megan
• Welsh, Lori
• West, Linda
• Wheeler, Nicole
• White, Jennifer
• Williams, Noel
• Williamson, Dawn
• Williamson, Jean
• Willis, Matt
• Wilson, Jay Mark, MD
• Winkels, Sonia
• Winthers, Amber
• Winthers, Dylan
• Wolfe, Anne
• Woodruff, Felecia
• Wyatt, Rachel
• Young, Nicki

Whether they volunteered for a day or a decade, each person bought something to the table to help us help families affected by CDH.  We are so grateful for every single one of them.

Sincerely,
Dawn Torrence Williamson
Grateful CDH Charity Leader

Friday, February 13, 2015

February 13 - Dear Nicholas Sparks

Dear Mr. Sparks,

Last night a few local charity board members, families and friends came over to my home to celebrate our 20th Anniversary by having a casual dinner and releasing balloons.

We "sold" balloons as a fundraiser - $5.00 per lit balloon to have a child's name put on it for the balloon release.   We were shocked when we sold 300 balloons!   That was a whole lot of balloons to blow up, light, photograph in a few hours but we are so blessed with great help.

It was an incredible night, one of the best ever.   To celebrate all that we've achieved with people who work so hard for our children and to look forward to all that we will accomplish still was amazing.  It still hasn't sunk in for me that it's been 20 years already.















What a great night for a great cause!  But our "real celebrations" are still to come on at our 2015 CDH Conference and our Masquerading Angels Ball.

Sincerely,
Dawn Torrence Williamson
Happy CDH Charity Leader

Thursday, February 12, 2015

February 12 - Dear Nicholas Sparks

Dear Mr. Sparks,

Today our charity turns 20 years old!


Look at all we have accomplished together over the years:

1995
  • CHERUBS, the first CDH Charity in the United States, was created
  • CHERUBS is granted an EIN and 501 (c) III Non-Profit Status
  • The first CDH Newsletter was published, Spring 1995 Newsletter
  • First CDH Parent Reference Guide created
  • Summer 1995 Newsletter
  • Fall/Winter 1995 Newsletter

1996
  • First newspaper article about CHERUBS is printed
  • First Charity to attend the American Pediatric Surgical Association Meetings CHERUBS
  • First charity CDH Research Study created
  • Medical Advisory Board established
  • Our first computer was donated by GSK
  • Joined the National Organization for Rare Disorders, Inc (NORD)
  • Joined the Alliance of Genetic Support Groups
  • Inspirational quotes added to newsletters
  • Grieving Parents column created
  • Spring 1996 Newsletter
  • Summer 1996 Newsletter

1997

1998
  • Our first Secretary, volunteer Judi Toth, mom of Christopher Toth
  • CHERUBS Volunteer Coordinator position is created
  • Congenital Diaphragmatic Hernia Research Survey Results are published
  • International & State Representatives are created
  • Cooking with Cherubs is published
  • CHERUBS 1999 Calendars are published
  • CHERUBS first bake sale
  • CHERUBS first raffle held
  • CHERUBS first on-line chats
  • CHERUBS membership grows to over 100 CDH families
  • Our first donated copy machine to print our own newsletters
  • Fall 1998 Newsletter

1999
  • First CHERUBS Logo
  • First CDH Get-Together in Washington DC
  • 375 members in 11 countries
  • 4 newsletters
  • Advisor to 20/20 Episode on Fetal CDH Surgery
  • First CDH Information Packets created
  • CHERUBS is contacted by ABC's 20/20 staff for input on a story of a cherub
  • CHERUBS members participate in Noah's Flood ECMO Fundraiser for National Children's Hospital in Washington, DC
  • Our first Grieving Parents Get-Together is held outside of Washington, DC
  • Congenital Diaphragmatic Hernia Research Survey Results are published
  • Listservs move to Onelist.com, which becomes Yahoogroups
  • A forum for CDH medical professionals is created
  • New seperate listservs were created for grieving parents and parents of survivors
  • Advisory Committee is created
  • Conference Committee is created
  • Kids Book Committee is created
  • Fundraising Committee is created
  • Research Committee is created
  • Welcoming Committees are created
  • Card Committees are created
  • Grant Committee is Created
  • Welcoming Committees are created
  • Totebag Committee is created
  • Library Committee is created
  • Offer parents free web site graphics
  • 2000 Calendars are published
  • First Lock-In Fundraiser
  • First t-shirts and sweatshirts are created
  • First Christmas Fairy fundraiser
  • Newsletter Tribute fundraiser is started
  • Over 500 members
  • Spring 1999 Newsletter

2000
  • First International CDH Conference
  • First CDH Fundraising Auctions on Ebay
  • First on-line CDH Awareness Items store via Cafepress
  • On-Line CDH Research Library created
  • CDH Research Survey Results
  • First CDH T-Shirts sold
  • First Ohio member picnic is held in Columbus, OH
  • First message boards were created
  • Cooking with Cherubs Volume II is published
  • First Celebrity Auction is held
  • Listservs were created for our various Committees
  • 750 members in 20 countries
  • Spring 2000 Newsletter
  • Summer 2000 Newsletter
  • Winter 2000 Newsletter

2001
  • Get-Togethers in North Carolina, Ohio and New England
  • First Australian Get-Together
  • First Grieving Parents Get-Together
  • Hospital Ambassador positions created (name later changed to Hospital Angels)
  • CHERUBS contributes to Family Circle magazine article on CDH
  • CHERUBS petition for Certification of Ultrasound Technicians is started
  • First member Candlelighting Ceremony is held
  • CHERUBS CDH Video Committee is formed
  • CHERUBS Australia creates it's own national web sit
  • CHERUBS reaches 750 members in 27 countries
  • Spring 2001 Newsletter
  • Summer 2001 Newsletter
  • Fall 2001 Newsletter
  • Winter 2001 Newsletter

2002
  • CHERUBS moves into it's first office
  • CHERUBS is contacted by Lifetime Televisions "Strong Medicine" for a CDH story line
  • First United Kingdom National Member Get-together is held
  • Australia National Member Get-together is held
  • CHERUBS 2nd Celebrity Ebay Auction is held
  • Get-Togethers in Ohio, Texas and Alabama
  • 1150 members in 35 countries
  • Ebay Auction Fundraiser
  • Avon and Pampered Chef Fundraisers
  • Fall 2002 Newsletter
  • Spring 2002 Newsletter

2003
  • Member Ebay Auction fundraiser is held
  • Australia National Member Get-together is held
  • United Kingdom National Member Get-together is held
  • Ohio member picnic is held in Columbus, OH

2004
  • Participated in the first International CDH Study Group Conference
  • Listservs were created for each state and country where we have members
  • CHERUBS cafepress store is launched
  • CHERUBS UK is granted Non-Profit Status
  • Australia National Member Get-together is held
  • Ohio member picnic is held in Columbus, OH
  • CHERUBS 2005 Calendars are published
  • CHERUBS Adopt A Cherub Link Program was started
  • 1400 families
  • Spring/Summer Newsletter
  • Winter 2004 Newsletter

2005
  • CHERUBS submits research data for inclusion in the International CDH Study Group Congress in Germany
  • Ohio member picnic is held in Columbus, OH
  • Australia National Member Get-together is held
  • Over 1500 CDH families
  • Spring/Summer 2005 Newsletter

2006
  • "Stories of Cherubs" is published
  • CHERUBS new web site is started
  • Ohio member picnic is held in Columbus, OH
  • Australia National Member Get-together is held

2007
  • Founding member of the Alliance of Congenital Diaphragmatic Hernia Organizations
  • Congenital Diaphragmatic Hernia Awareness Ribbon Created
  • CHERUBS Australia files for Non-Profit Status
  • CHERUBS Board of Directors welcomes 3 new members
  • Angels for CHERUBS is started
  • CHERUBS New Member Coordinator position is created
  • New web site goes live
  • CHERUBS offers parents personal photo albums on-line
  • CHERUBS offers parents personal web blogs
  • CHERUBS offers dads their own forum
  • CHERUBS offers grandparents their own forum
  • Angel Ball Committee is formed
  • Ohio member picnic is held in Columbus, OH
  • Michigan get-together is held in Flint, MI
  • CHERUBS Posting Contest Started
  • ATV Rally Planned
  • CDH / NICU Baby Book Committee formed
  • Trick-or-Treat for CHERUBS Fundraiser started
  • CHERUBS joins GoodSearch.com
  • First Congenital Diaphragmatic Hernia Information Packet Party held
  • Congenital Diaphragmatic Hernia Awareness Jewelry designing begins
  • CDH Awareness Logo created
  • CHERUBS Blog created
  • CHERUBS Live Space created
  • CDH Car Wash
  • CHERUBS Truffle Sale is held
  • CHERUBS is listed with Wikipedia
  • Children's Holiday Card Drawing Contest
  • First CDH Donation Jars
  • Christmas Fundraising Posters for Stores
  • Valentine's Day Fundraising Posters for Stores
  • Over 2000 CDH families
  • CHERUB Web Site averages 300,000 hits per month
  • CDH awareness ribbon car magnets created
  • Stories of Cherubs Vol. II was published, featuring almost 100 more stories of CDH patients
  • Cooking With Cherubs Vol. III was published and included recipes from around the world
  • Created over 100 Personalized CDH Awareness Ribbons for member
  • Published photographs of over 500 cherubs in our 2009 CHERUBS Calendar
  • Led the fight against the Congenital Diaphragmatic Hernia Awareness Trademark
  • Sold 100's of CDH awareness items on Cafepress and added dozens more products
  • We started a skateboard design fundraiser on Zazzle
  • Our first CDH Awareness Bracelets were sold
  • We added a new Facebook account and reached 100's of people, educating them and raising CDH awareness
  • We used our Myspace account to raise more CDH awareness
  • We launched our CDH Research Site and are working on getting the database up
  • National Children's Memorial Day
  • Our blanket committee was started
  • We did a Television Interview for our local events and explained what CDH is
  • We were featured or quoted or referred to in over a dozen newspaper articles
  • Worked CDH Study Group on our database
  • Over CDH forums had over 30,000 posts last year
  • We provided over 50 CDH families with blogs to journal about their cherubs
  • We created CDH Awareness templates for Myspace and Blogspot - reaching 1000's of people!
  • Jeremiah's Car Show
  • New England Zoo Trip
  • Gabe's Bowl-A-Thon
  • Gabe's Truffle Sale
  • 2007 Newsletter

2008
  • CHERUBS name changed to CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
  • CHERUBS becomes Incorporated
  • CDH Conference in Raleigh, NC
  • First CDH Golf Tournament
  • First CDH Angel Ball
  • First CDH Awareness YouTube Channel Created
  • Ohio Member Picnic
  • First CDH Celebrity Spokesperson
  • Michigan Member Get-Together
  • North Carolina Member Get-Together
  • Grieving Parents Get-Together
  • ATV Rally
  • Angel Baskets created
  • 2008 Newsletter

2009
  • International CDH Conference in San Antonio
  • CDH Kids Song written
  • Pennsylvania Camping Trip
  • Ohio Member Picnic
  • Lilly Beck Jewelry Fundraiser
  • Participated in Chase Community Giving Contest
  • Personalized CDH Awareness Ribbon program started
  • Change for CHERUBS Fundraiser
  • Christmas with Kasey Fundraiser
  • First CDH Fundraisers on Firstgiving.com
  • Adopt a Hospital Program started
  • CDH Baby Book written
  • CDH HOPE Totebag project created
  • CDH Superhero items created
  • CDH Research Fund created
  • CDH Family Support Fund created
  • CDH Scholarship Fund created
  • CDH Financial Assistance Fund created
  • CDH Awareness Fund created
  • Jak’s Pub Crawl
  • Texas Bake Sale
  • "I Own Congenital Diaphragmatic Hernia Awareness" Video created
  • First CDH Awareness apps created
  • Kohl’s Department Store volunteer day at CHERUBS
  • CDH Awareness Blog Ring
  • Churches for Cherubs Day of Prayer
  • Spring 2009 Newsletter
  • Winter 2009 Newsletter

2010
  • April 19, 2010 CHERUBS defeats the trademark on "Congenital Diaphragmatic Hernia Awareness
  • New Social Media CDH Awareness campaign begun
  • First Save the Cherubs Photo Shoot
  • Congenital Diaphragmatic Hernia Baby Books go to print
  • Over 3200 members
  • Valentine's Day Fundraiser
  • Save the Cherubs Campaign started
  • "I'll Never Let You Go" song and CDH Awareness Video Released
  • Work begun on the CDH Research Bill, with immediate support of 2 Senators.  2 more would pledge their support in the next few months.
  • CHERUBS walks in the Great Human Race
  • New CDH Awareness Shop Opened
  • 831 Photography Fundraiser in memory of Drew Lewallen
  • Save the Cherubs & Sroka family on ABC News
  • CDH Awareness Road Rally in SC
  • Addison's Lemonade Stand Fundraiser
  • Special Needs Conference in Ohio
  • CHERUBS in Triangle March for Babies
  • Annual Pennsylvania Member Picnic
  • Green Family in Triangle March for Babies in Maryland
  • "Congenital Diaphragmatic Hernia Awareness Daily" slogan created.
  • 2010 International CDH Conference held in Orlando, FL
  • CHERUBS represents the CDH Community at the American Pediatric Surgical Association Conference
  • CHERUBS represents the CDH Community at the American Pediatric Surgical Nurses Association Conference
  • First "Parade of Cherubs"
  • Avon Fundraiser
  • Scentsy Fundraiser
  • Myers Family in Triangle March for Babies in Texas
  • Tupperware Fundraiser
  • Miche Bag Fundraiser
  • New CDH Fundraiser site created for families wanting to hold events in honor / memory of their cherubs
  • NC CHERUBS Zoo Trip took place at the Greensboro, Zoo
  • Save the Cherubs & Aaron Younce in the news
  • CHERUBS support CDH charities Real Hope for CDH & the Olivia Raine Foundation in Chase Giving contest
  • Work on new CDH Research Database begun
  • The World's First CDH Awareness Billboard
  • Oz Kidd-Ward CDH Scholarship Fund created
  • Larrison family CDH Hope Totebag item drive in memory of Hanna Rae Rose Larrison
  • Navy sailors at Norfolk put together 100 handprint kits for CDH Hope Totebags in memory of Hanna Rae Rose Larrison
  • CHERUBS members take "Vote for Cherubs" photos
  • CHERUBS wins $30,000 in the national APX Gives Back charity competition, coming in 2nd place and gathering 1000's of votes.
  • Soap Star Patsy Pease appeals for votes for CHERUBS
  • Newspaper Interviews
  • 10 annual CHERUBS Ohio Member Picnic
  • More Save the Cherubs photo shoots
  • CHERUBS made public Non-Profit retroactive to 2007
  • Our APX check award ceremony press conference raised more CDH Awareness
  • APX Contest Within Contest
  • 31 Party Fundraiser for Oz Kidd-Ward Scholarship Fund
  • Work on new CDH Forums begun
  • First full-time charity employee
  • Multiple newspaper interviews on APX contest
  • CDH Research Committee works over time on research article
  • CHERUBS & CDH represented in Fetal Hope March in NC in memory of Zoe Fisher
  • 2010 Masquerading Angels Ball
  • Trick-or-Treat for CHERUBS
  • TV interviews for Angel Ball raise awareness
  • Multiple newspaper interviews for Angel Ball
  • Radio Awareness on 96Rock
  • Roller Derby Fundraisesr for Oz-Kidd Ward Scholarship Fund
  • Blowing Rock Fundraiser for Oz-Kidd Ward Scholarship Fund
  • Vote for CDH Video created featuring videos submitted by members
  • Baby Shower in honor of Aaron Younce
  • Fosythe Hospital Walk to Remember
  • Tastefully Simple Fundraiser
  • Hot Air Balloon Ride Raffle Fundraiser
  • CHERUBS raises CDH Awareness to over half a million people Raleigh Christmas Parade
  • 2nd Annual Christmas With Kasey Fundraiser
  • CHERUBS Holiday Shopping Ebay Fundraiser
  • CHERUBS in Televised Parade Video on 2 TV Stations
  • Angel Ball Committee Chuck E. Cheese Family Get-Together
  • Enamel CDH Awareness Ribbons created
  • Over 200 personalized CDH Awareness Ribbons created
  • CHERUBS represented by Floyd family in Mississippi Christmas parade
  • CHERUBS work with 9 other charities in Pepsi Refresh
  • Over 35 celebrities Tweet for CHERUBS in Pepsi Refresh
  • CHERUBS Press Release picked up on over 4000 news outlets
  • 2011 CDH Cherubs Calendar
  • 2011 Save the Cherubs Calendar
  • 2010 National Children's Memorial Day Tribute
  • Breaths for Brielle Cha Cha for CHOP Zumbathon
  • Over 250 CDH Hope Totebags mailed out over the year
  • Over 75 Save the Cherubs CDH Awareness poster photographs created
  • Board of Directors adds 2 new members
  • CHERUBS reaches 3500 members
  • 2010 Newsletter

2011
  • First International Day of CDH Awareness held on April 19th
  • First CDH Awareness Parade of Cherubs held in Raleigh
  • International CDH Conference in Orlando
  • Win $32,000 in Vivent Gives Back Contest
  • Charlie Sheen helps raise CDH Awareness
  • Ohio Member Picnic
  • Holiday Card Exchange
  • Raleigh Christmas Parade Float
  • CDH Cruise Raffle
  • 2012 CDH Awareness Calendar
  • Silent Auction
  • Christmas with Kasey Fundraiser
  • Silpada Fundraiser
  • Trick-or-Treat for CHERUBS
  • 2011 Holiday Vendor Show
  • Masquerading Angels Ball
  • Charlie Stanfield-Maher Ball
  • CDH Horse Racing Night
  • Braiden’s Bowl-a-Thon
  • North Carolina Get-Together
  • Atlantic City Marathon
  • Today’s American Mrs 2011 Pageant
  • Dozens of new CDH awareness videos

2012
  • New Executive Board of Directors
  • New Parent Advisory Board
  • New Medical Advisory Board
  • Senate Bill S.3396 Introduced
  • Parade of Cherubs on April 19th in Washington DC to Capitol Hill
  • Members met with the offices of over 25 Senators
  • April 19th CDH
  • Parades of Cherubs on April 19th in Chicago, Seattle, Portland, Denver, St. Louis, Peoria
  • UK Light up The Night on April 19th
  • First ever Virtual CDH Awareness Parade on April 19th
  • 2012 CDH Conference in San Francisco
  • New CHERUBS Web Site
  • New Facebook Forums Application created
  • $10,000 CDH Research Grant awarded to CHOP on December 30th (by votes)
  • Another $10,000 CDH Research Grant awarded to DHREAMS on December 30th
  • First ever Facebook Grant Contest held by a CDH charity
  • Over 300 care packages sent to families through our CDH HOPE Totebag project
  • CDH families represented at the American Pediatric Surgical Association conference
  • Our 2012 National Children's Memorial Day tribute honored the memories over 1000 cherubs
  • Texas Get-Together
  • Ohio Picnic
  • UK Get-Together in Scotland
  • Chicago CDH Carnival
  • Pennsylvania / NJ / Delaware Picnic
  • Denver Picnic
  • Indiana Get-Together
  • Washington Zoo Trip
  • Oregon members met with Senators
  • Oregon members represent CDH families at the opening of Randall Children's Hospital
  • Over 900 raffle tickets sold for the 50/50 CDH Research Raffle raising $9000 for Research
  • Over 10,000 Facebook Fans reached
  • Over 10,000 signatures reached on CDH Research Bill petition
  • Over 18,000 people reached in one post on Facebook
  • 2012 Silver Lining Newsletter Published
  • 2012 CDH Awareness Video
  • Day of 2012 CDH Awareness Video
  • Participated in televised Raleigh Christmas Parade
  • CHERUBS members in Claremont, NC Christmas Parade
  • CHERUBS members in Snoqualmie Days Parade
  • It's a Knock-Out UK Fundraiser
  • Masquerading Angels Ball
  • UK Formal Ball
  • CDH Awareness Calendar featuring over 1300 CDH patients
  • Save the Cherubs CDH Awareness Calendar
  • First CDH Awareness Calendar in the United Kingdom
  • Won Shane Co. charity contest
  • Won the JuJuBelle Facebook contest
  • Our CDH Awareness Ribbon included in St. Louis Cardinals Game to raise money for St. Louis hospital
  • Washington Mud Run Fundraiser
  • Enter Stage Left Fundraiser
  • UK Fishing Competition Fundraiser
  • Rockin' for Aidan Fundraiser
  • CHERUBS joins Google+
  • CHERUBS joins Chirpify
  • CHERUBS joins Pinterest
  • CHERUBS joins Instagram
  • CDH Fundraising Kits created
  • Cooking With Cherubs cookbook project begun
  • Participated in the San Francisco Marathon
  • Participated in the Boston Marathon
  • Participated in the Baltimore Marathon
  • Participated in the Great Human Race in Durham, NC
  • Participated in the Iron Girl all women's half Marathon in the Mid-Atlantic
  • Participated in the Baltimore, MD Metric Marathon
  • Participated in the High Cloud Snapple Half Marathon in Washington, DC
  • Save The Cherubs in the Silicon Valley
  • New Holiday Facebook Covers project started
  • Dozens of free CDH Awareness graphics made
  • New yellow CDH Awareness Bracelets created
  • 47 members of the Angel Club
  • Over 100 new Save the Cherubs posters created
  • Membership reaches over 4200 families in 54 states
  • CHERUBS moves to new office
  • 5 television interviews
  • Over 2 dozen newspaper articles
  • 1 magazine article
  • Moved to new office
  • CHERUBS 2012 Newsletter

2013
  • New Logo
  • New Parent Advisory Board
  • New Medical Advisory Board Members
  • Worked with other CDH organizations and research groups to re-establish the Alliance of Congenital Diaphragmatic Hernia Organizations
  • Senate Resolution S. Res. 85 Introduced and passed unanimously to make April Congenital Diaphragmatic Hernia Awareness month
  • House Resolution H. Res. 133 introduced
  • Joined the Combined Federal Campaign
  • Parade of Cherubs on April 19th in Washington DC to Capitol Hill
  • Members met with the offices of over 25 Senators
  • April 19th CDH Parades of Cherubs in New York City, Dallas, Chicago, Philadelphia, Phoenix, Seattle, Portland, Denver, St. Louis, Peoria, Salt Lake City
  • UK Plane Jump Fundraiser
  • CDH Baseball Night at the Las Vegas 51's
  • Virtual CDH Awareness Parade on April 19th
  • 31 Governors proclaimed April 19th a Day of CDH Awareness
  • 12 Mayors proclaimed April 19th a Day of CDH Awareness
  • CN Tower in Toronoto lit for April 19th
  • Miami Tower lit for April 19th (thanks to the Olivia Faith Foundation)
  • Dublin City Hall lit for April 19th
  • New CDH Mascot "Hope"
  • 2013 CDH Conference in Boston
  • Mass General CDH Genetic Lab Tour
  • New CHERUBS Web Site
  • $10,000 CDH Research Grant contest held in December
  • $10,000 CDH Research Grant awarded to Shands for Kids
  • $10,000 CDH Research Grant awarded to Texas Children's Hospital Fetal Research Center
  • $5000 CDH Research Grant awarded to Mass General CDH Genetic Research Center
  • Additional CDH Research Grants awarded to DHREAMS, Shands, Legacy Emanuel, Lurie Children's and Seattle Children's Hospitals
  • A total of over $50,000 in grants from Congenital Diaphragmatic Hernia Research granted by CHERUBS in 2013
  • Over 250 care packages sent to families through our CDH HOPE Totebag project
  • 2013 CDH Magazine
  • 10 new videos made
  • 2 College Scholarships awarded at $1000 each
  • Financial Assistance to a dozen families
  • CDH families represented at the American Pediatric Surgical Association conference in San Marco, Florida
  • Participated in a meeting of DHREAMS participating research centers
  • Participated in Meet the Experts at the Fetal Research Center at CHOP
  • CDH families represented and speech given at Euro CDH Conference in Holland
  • Our 2012 National Children's Memorial Day tribute honored over 1000 cherubs
  • Texas Get-Together
  • California Get-Together
  • Ohio Picnic
  • UK Get-Together
  • Pennsylvania / NJ / Delaware Picnic
  • Denver Picnic
  • Indiana Get-Together
  • Utah Get-Together
  • Nevada Get-Together
  • Over 600 raffle tickets sold for the 50/50 CDH Research Raffle
  • Over 25,000 Facebook Fans reached
  • Average social media reach of 100,000 people weekly
  • Participated in televised Raleigh Christmas Parade
  • 5th Masquerading Angels Ball
  • UK Formal Charley's Masquerade Ball
  • CDH Awareness Calendar featuring over 1600 CDH patients
  • Save the Cherubs CDH Awareness Calendar
  • Won the Emericon contest on Facebook
  • Groupon Totebag Fundraiser
  • One a WEGO Health Award
  • Participated in marathons in NYC, Baltimore, Blue Ridge of Virginia, Atlantic City, Pittsburg
  • Runs held in Canada, Ohio and North Carolina
  • Participated in a Color Me Rad Run
  • New Holiday Facebook Covers project started
  • Dozens of free CDH Awareness graphics made
  • Over 100 new Save the Cherubs posters created
  • Membership reaches over 4700 families in 60 countries
  • National Children's Memorial Day memorial to over 1200 lost cherubs
  • Monthly medical expert speakers on the forums
  • Became an official #GivingTuesday charity
  • Given a Gold Seal by guidestar.com
  • Given a 5-star rating on greatnonprofits.com
  • Participated in Couture for a Cause fashion show
  • 4 television interviews
  • 1 short film
  • First CDH word clouds created
  • Over 2 dozen newspaper articles
  • 100's of newspaper reprints of our press releases
  • Justcoz.org reach of over 50,000
  • Created first CDH Trolley Tokens
  • First charity to plan a Euro CDH Conference
  • First CDH Window display
  • T-fund T-shirt fundraiser
  • "A Fighter's Lullaby" song fundraiser
  • CDH Jewelry Fundraiser
  • Indiana Car Show
  • Wine and Design Fundraiser
  • Members hold dozens of fundraisers in honor and in memory of cherubs
  • CHERUBS 2013 Newsletter

2014
  • Rang the Closing Bell on the NYSE
  • Won Presidential Point of Light Award
  • Held first International CDH Conference in Europe
  • 2014 CDH Conference in Washington DC
  • Won 3rd place in national Dare Me For Charity contest
  • Participated in Dare Me For Charity events in; Las Vegas, Tempe, New York, Columbus, New Orleans, Denver, St. Louis, Detroit, Edina (Minnesota), Boston, Pittsburgh and Jacksonville.
  • CDH Awareness Month Resolution passed in United States Senate
  • CDH Awareness Month Resolution introduced in United States House of Representatives
  • Met with Congressmen on Capitol Hill
  • CHERUBS Dinner on Capitol Hill
  • 46 states proclaim April 19th for CDH Awareness
  • 72 mayors proclaim April 19th for CDH Awareness
  • Appeared on "Good Morning America"
  • Appeared on "Today Show""
  • Supported cherub Rudy Abreu on "So You Think You Can Dance"
  • Phillies vs Mets CDH Awareness Game
  • CN Tower in Toronto lit on April 19th for CDH Awareness
  • Mercedes Benz Super Dome lit on April 19th for CDH Awareness
  • Dublin City Hall lit on April 19th for CDH Awareness
  • Wells Fargo Duke Energy Center in Charlotte lit on April 19th for CDH Awareness
  • Miami Tower lit on April 19th for CDH Awareness
  • PECO Building in Philadelphia lit on April 19th for CDH Awareness
  • Cleveland Terminal Tower lit on April 19th for CDH Awareness
  • One Liberty Place Building in Philadelphia lit on April 19th for CDH Awareness
  • RSA Battle House Tower in Mobile lit on April 19th for CDH Awareness
  • Tampa Sun Trust Building lit on April 19th for CDH Awareness
  • City Place of West Palm Beach lit on April 19th for CDH Awareness
  • CDH Awareness Walk and Easter Egg Hunt in St Louis
  • Shands @ UF CDH Awareness Parade in Gainesville
  • 2014 CDH Awareness Event in Portland
  • CDH Awareness Ziplining Fundraiser in the UK
  • Baby B.L.U. 5K Race
  • CDH Awareness Day Event in Mesa, AZ
  • Applebee's CDH Awareness Night in Fresno, CA
  • CDH Awareness at Midcoast Pizza & More in Maine
  • Spin For CDH Awareness in Wilmington, NC
  • Parade of Cherubs in Portland
  • 4 CBS Outdoor Billboards light for CDH Awareness
  • CDH Awareness at the Philadelphia Zoo
  • Carnegie Science Center Lighting in Pittsburg
  • Hike the Hill for Congenital Diaphragmatic Awareness in Ohio
  • CDH Awareness Egg Roll in Ohio
  • Vance Thompson Vision Lighting in South Dakota
  • 10 Billboards - South Dakota
  • Salt Lake Bees Baseball CDH Awareness Night
  • CDH Awareness Night with the Las Vegas 51's
  • 2014 Day of CDH Awareness Texas Picnic
  • Member homes light up pink, blue and yellow
  • Membership reached 5000
  • Join the Combined Federal Campaign
  • April Showers for CDH Babies campaign
  • Peter Harris Clothes charity of the year
  • 2014 CDH Newsletter
  • 2015 CDH Awareness Calendar
  • CDH Radio Show
  • Member picnic in Indiana
  • Member picnic in Louisiana
  • Christmas cookie exchange and lunch in Nevada
  • Member picnic in Colorado
  • Fall Festivities in Oregon
  • Member brunch in Arizona
  • Mustang Club of Indianapolis Car Show benefiting CHERUBS
  • Member picnic in North Carolina
  • Member picnic in Ohio
  • Awareness walk in Ohio
  • 3 Shirt Fundraisers
  • 50/50 CDH Raffle for Research Contest
  • CDH Research Grant Contest
  • Created over 100 new graphics
  • 2014 CDH Awareness Holiday Cards
  • Created 5 more CDH Awareness Videos
  • Participated in Couture for a Cause
  • Participated in National Children's Memorial Day, honoring over 1900 lost cherubs
  • Participated in #GivingTuesday
  • Created CDH Funeral Assistance Fund
  • Awarded 1 CDH Scholarship
  • Awarded 12 Financial Assistance Grants to families
  • 4 Hospitals Presented with CDH Kits
  • Over 200 CDH HOPE Totebags sent to new and expectant CDH Families
  • Over 200 CDH Information Packets sent to CDH Families
  • Successfully petitioned correction of CDH info from "The Doctors" show
  • Installed new Board of Directors
  • Installed new members of the Parent Advisory Board
  • Office assistant hired
  • Over 100 CDH Angel Club members
  • Created CDH Support Groups on Facebook
  • CDH Ice Bucket Challenges
  • Reached over 22,000 Facebook Fans
  • Reached over 14,000 Twitter Followers
  • 2014 Silver Lining Newsletter

2015
  • April 19th proclamations for a dozen states so far
  • 20th Anniversary CDH Cruise
  • Masquerading Angels Ball
  • Monthly CDH Contests
  • More to come!
This group of moms, dads, survivors, grandparents and friends have done a lot in 20 years but we have a long, long way to go still!

We could go a lot farther, a lot faster, with your help Mr. Sparks.

Sincerely,
Dawn Torrence Williamson
Proud CDH Charity Leader

Wednesday, February 11, 2015

February 11 - dear Nicholas Sparks

Dear Mr. Sparks,

Apparently driving around shopping for event items with a mannequin in your car dressed in our mascot costume is not a good idea.   Especially laying down in the back of my SUV with the feet sticking out.  

This is not something that I ever thought would be part of my job description.

Anything to raise CDH Awareness.

Sincerely,
Dawn M. Torrence Williamson
Charity Leader

Tuesday, February 10, 2015

February 10 - Dear Nicholas Sparks

Dear Mr. Sparks,

It is chaos here this week with our charity's 20th anniversary. 

We are planning a huge balloon release that we thought would be 100 balloons.  We underestimated.

We are trying to meet our $1,000,000 goal for CDH by Thursday.

We have another huge project deadline to make by Thursday.

We also have "regular work" like mail, e-mail, totebags to put together, phone calls to make, meetings to schedule and more.

We need more help!

My letters will brief this week. 

Sincerely,
Dawn M. Torrence Williamson
Busy CDH Mom

February 9 - Dear Nicholas Sparks

Dear Mr. Sparks,

I'd like to share something with you that I wrote in 2009:


No One Knows....
by Dawn Williamson

No one knows what it's like to be diagnosed with Congenital Diaphragmatic Hernia and have your world shatter - unless they have been there themselves.

No one knows what it's like to watch your baby struggle to breathe - unless they have been there themselves.

No one knows what it's like to cry yourself to sleep at night wondering if today was the last day you had with your child and the hospital could call at any minute - unless they have been there themselves.

No one knows what it's like to have to leave the pediatric intensive care unit because you've been there so long that they kick you out - unless they have been there themselves.

No one knows what it's like to sleep on the floor of the ICU waiting room because the Ronald McDonald House is too far way at just 2 blocks from the hospital and you need to be RIGHT THERE in case your child needs you - unless they have been there themselves.

No one knows what it's like to sit in a Care Conference crying for your child's rights, begging staff to not give up on your baby and send him to a chronic care facility - unless they have been there themselves.

No one knows what it's like to have to learn how to work life support systems that your child's very being depends on - a ventilator, an oxygen concentrator, feeding pumps - unless they have been there themselves.
No one knows what it's like to ask yourself "Why my child?" so many times that even God is tired of hearing it - unless they have been there themselves.

No one knows what it's like to have to explain over and over and over and over what your child's medical condition is to family and friends and a society that has never heard of it - unless they have been there themselves.

No one knows what it's like to struggle with marriage issues because you're dealing with reality in different ways and one of you is stuck with making all the decisions while the other lives in la-la-land - unless they have been there themselves.
No one knows what it's like to scream at a nurse that they don't know what they are doing while suctioning your child's ET-tube and it's about to come out and if they don't step away from his bed you will step in and physically remove them - unless they have been there themselves.

No one knows what it's like to have to fight to get treatment for a bedsore on your child's back from being in the same position for 3 weeks - unless they have been there themselves.

No one knows what it's like to actually loudly cheer for a child to pee - just pee - unless they have been there themselves.

No one knows what it's like to never hear your child cry until they are a year old because there are tubes down his throat preventing his vocal cords from working - unless they have been there themselves. 
No one knows what it's like to not hold your child until 2 weeks after he was born because he's hooked up to too many machines keeping him alive - unless they have been there themselves.

No one knows what it's like to lose count of how many IVs your child has had, or what scars are from what surgery, or how many meds he's been on in his entire life, or doctors he's seen - unless they have been there themselves.

No one knows what it's like to be on your hands and knees in a surgical waiting room begging and pleading with God to take you instead of your child - unless they have been there themselves.

No one knows what it's like to put a tube down your child's nose and into their stomach, or past the stomach - while making sure not to hit the lungs - so that your child can eat formula from a pump - unless they have been there themselves.
No one knows what it's like to miss a pulse ox when it's gone because then you can't sleep because you're terrified that your child will stop breathing - unless they have been there themselves.

No one knows what it's like to hook your child's ventilator up to a car battery because the power is out, while screaming at the electric company to fix the problem and talking to the doctors and ordering an ambulance at the same time - unless they have been there themselves.
No one knows what it's like to call 911 more than you call the pizza delivery place - unless they have been there themselves.
No one knows what it's like to duck from flying hearing aids because your 2 yr old can't understand that they aren't toys and need to stay in his ears - unless they have been there themselves.
No one knows what it's like to watch "normal" healthy kids and make wishes for your child that you aren't sure will ever happen, like riding a bike or going to school or playing baseball- unless they have been there themselves.

No one knows what it's like to have had more rides in ambulances in your life than in taxi cabs - unless they have been there themselves.

No one knows what it's like to go out in public and have people point and whisper about your baby, because he's in his stroller attached to a vent, oxygen tank, feeding pump, and pulse-ox - and yet you put on a cute little outfit or a baseball cap on his head in a feeble attempt to make him look less conspicuous and more normal - unless they have been there themselves.
No one knows what it's like to go into the ladies room and cry alone because you don't want your baby to see you crying beside his hospital bed - unless they have been there themselves.
No one knows what it's like to try to sing songs and read children's books to your child like everything is normal and you so desperately want all the normal things healthy families have, even though you don't know if your child will live through the week because he has a blood infection - again - unless they have been there themselves.

No one knows what it's like to be told your child's kidneys are shutting down, oxygen levels are below 50, and he won't live through the night - but he does - unless they have been there themselves.

No one knows what it's like to travel with more electric equipment in your car than the FBI - unless they have been there themselves.

No one knows what it's like to spell D-I-A-P-H-R-A-G-M-A-T-I-C H-E-R-N-I-A in your sleep - unless they have been there themselves.

No one knows what it's like to hire home health nurses and then have to oversee them and make sure that they aren't sleeping when your child's vent pops off his trach at 1 am - unless they have been there themselves.

No one knows what it's like to jump up and down squealing because your child is walking - at 2 and a half yr old - unless they have been there themselves.

No one knows what it's like to battle the school system and have an IEP for a child who has a feeding tube, hearing aids, thick eyeglasses and being told that they "can't handle all his issues" so you are better off homeschooling - unless they have been there themselves.

No one knows what it's like to consider moving to another country to get their universal health care because your child doesn't qualify for any decent insurance with all his pre-existing medical conditions and you can't afford the medical bills of the $6 million dollar baby unless you make so little money that you qualify for Medicaid - unless they have been there themselves.

No one knows what it's like to be asked "so what caused him to be sick?" while being looked at like YOU did something to cause it - and have the only answer that anyone has to that question "I DON'T KNOW!" - unless they have been there themselves.

No one knows what it's like to carry medical records with you every where you go "just in case" - unless they have been there themselves.

No one knows what it's like to perform CPR on your own child - more than once - unless they have been there themselves.

No one knows what it's like to plan holidays and vacations around hospitalizations, doctor visits, therapy appts and cold and flu seasons - unless they have been there themselves.

No one knows what it's like to not be able to go home for Christmas because your child could catch a cold that would kill him - unless they have been there themselves.

No one knows what it's like to grieve a LIVING child because your dreams are gone, then living with the guilt of feeling that way - unless they have been there themselves.

No one knows what it's like to try to communicate with a child who can't talk and struggles with sign language to the point that both of you cry - unless they have been there themselves.

No one knows what it's like to be young and have the responsibility of not only being a parent but a parent of an extremely special needs child - unless they have been there themselves.
No one knows what it's like to scream down the hospital hallway "Help! My child can't breathe!" or "Where is my son's 2:00 meds?" or "He is allergic to that!" - unless they have been there themselves.

No one knows what it's like to leave the hospital without your baby but with his bed sheets and linens instead because he's allergic to EVERYTHING and so you wash them in gentle detergent and bring them back for him - unless they have been there themselves.

No one knows what it's like to live in constant worry that another child will spill his milk on your child, sending him into anaphylactic shock if the epi pen you carry EVERYWHERE isn't given fast enough - unless they have been there themselves.

No one knows what it's like to be in the hospital so much you're on a first name basis with your surgeons, PICU doctors, nurses, secretarial staff and the cleaning crew - to the point that you double-date with your spouses, take vacations together and still send each other Christmas cards 15 yrs later - unless they have been there themselves.

No one knows what it's like to be in the hospital so long that when you come home you actually miss the cafeteria food - unless they have been there themselves.
No one knows what it's like to spend every hour that visiting isn't permitted in the PICU in the medical library, looking up your child's birth defect because NO ONE SEEMS TO KNOW WHAT THE HELL IT IS or where you can find information or support. And then spending hours beside your child's hospital bed with a medical terminology book translating it all - unless they have been there themselves.

No one knows what it's like to be told that your child won't live to be transported to the larger hospital so you should say good-bye - unless they have been there themselves.

No one knows what it's like to have a surgeon tell you "we've done this surgery so many times on him that we aren't sure how else to go in there" - unless they have been there themselves.

No one knows what it's like to watch your child's first haircut being done by a nurse to prep for an IV going into this head instead of at the barber - and still taking photos of it for his baby book - unless they have been there themselves.

No one knows what it's like to be told that your son will never see or hear or breathe on his own, and then show them that they are wrong - unless they have been there themselves.
No one knows what it's like to be so frustrated with feeding therapy, begging your child to please "take just one bite for Mommy, PLEASE" - unless they have been there themselves.

No one knows what it's like to be so excited to meet a medical professional who UNDERSTANDS what CDH is and who really, truly cares about these kids, your kid, and how that person now has your gratitude and part of your heart forever - just for caring - unless they have been there themselves.
 
No one knows what it's like to lose your child - unless they have been there themselves.
No one knows what it's like to lose your child in your own arms, while they look up at you and you try and try to save them but can't - and the guilt you live with every day for not being able to perform a miracle, the impossible, more than even the doctors because you're mommy and you're supposed to do the impossible - unless they have been there themselves.

No one knows what it's like to pick out the clothes your child will be in forever, buried in and what toys and books to pack with him - unless they have been there themselves.

No one knows what it's like to cry so much your heart feels like it's coming out of your throat because you miss your baby so much - unless they have been there themselves.
No one knows what it's like to mourn and grieve and try to make something good come from all the sadness without going over the deep end and trying to make a martyr out of your child's memory and turning them into a superhero instead of ... your baby .... because you want to remember them for who they were and not who you wanted them to be - unless they have been there themselves.

No one knows what it's like to ask God a different "Why my child?" question millions and millions of times until He cries with you - unless they have been there themselves.

I know, because I have been there. I didn't read it in a book or in someone else's story. I didn't learn about this from an article or research abstract. I don't pretend to understand things I never experienced. I lived it all. I cried it. I survived it. I woke up to every single day. I slept with it on my mind every single night. I was immersed in this world of CDH for 6 and a half years. I still am. CDH is more just a birth defect. It's more than a day or a few weeks in the hospital. It's more than 1 surgery. It's every single moment in a cherub's life. Every single one. I know this because I lived it.

And I know over 2200 other moms who have lived it too. Who understand. Who didn't learn from book or stories but who lived it. Parts of it or all of it. They understand. They are the moms and dads and children of CHERUBS.


This is the life of family fighting Congenital Diaphragmatic HerniaThese families need a voice.

Sincerely,
Dawn M. Torrence Williamson
Mom who knows what it's like