October 17 - Dear Nicholas Sparks

Dear Mr. Sparks,

Yesterday we posted a press release to help raise more CDH Awareness:

RALEIGH, N.C., Oct. 16. 2015 /PRNewswire/ -- After 10 months of writing letters to Nicholas Sparks, CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support, turns to the author seeking his help. They want him to feature congenital diaphragmatic hernia (CDH) in one of his upcoming novels.

CDH occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year) and has a 50% mortality rate. The cause of CDH is not yet known. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity.

"Our CDH stories have heartache and sorrow, joy and hope, life and passing," says president and founder Dawn Williamson. "We have the perfect opportunity to increase CDH awareness and a guaranteed following of Mr. Sparks to insure the novel's success."

Only one thing is missing. Mr. Nicholas Sparks, who is touring with his new romantic-thriller, "See Me," needs to agree to include CDH in a book. So far, there is no indication whether or not Mr. Sparks will accept the challenge.

"We have all the source material he would need," says the CHERUBS office manager Jason Miller. "There are literally thousands of both survivor and non-survivor stories from which Sparks can glean."

Williamson extends an invitation to Sparks for the upcoming CHERUBS Masquerading Angels Ball at TPC Wakefield Plantation in North Raleigh. "A masquerade ball, singles mingling, pretty dresses- this has everything the top romance writer needs to fuel a story," smiles Williamson, who happens to be single herself.  "Mr. Sparks is a very handsome man.  The dashing writer arriving at the masquerade ball to be the date of the charity leader who wrote to him daily seeking his help in memory of her son and to help other children would make a very romantic storyline, wouldn't it?" teased Williamson.

Williamson has had the opportunity to meet Sparks twice so far, including at an event in Chapel Hill this week.  "I was able to talk to him about including CDH in one of his future books.  He didn't say yes.  But he didn't say no.  I know he has a good heart for children because he has his own foundation.  Many of his characters do die in his novels so it's not far-fetched to ask him to make the cause of death CDH to help us help these children.  More awareness equals more research funding for these babies.  They need his voice."

"The only mission at CHERUBS is to help families affected by CDH by searching for the cause, prevention and best treatments of Congenital Diaphragmatic through research and awareness while supporting the CDH community.  We focus on the whole CDH community, not personal missions," says Miller.

http://www.savethecherubs.org

Video - https://www.youtube.com/watch?v=2ToNjVIVniw

It reached over 6500 newspapers, stations and web sites in just 2 days.  Isn't that incredible?   Yet, people are not reaching out to us to learn more.  The phone isn't ringing off the hook with reporters wanting to learn about CDH.  

Awareness is being raised.  But our voice isn't loud enough.  We need you.

Sincerely,
Dawn M. Torrence Williamson
CHERUBS President

October 16 - Dear Nicholas Sparks (Guest Blogger Brigette Tophen)

Dear Mr. Sparks, 

I am writing this letter to share our story with our daughter's CDH in the hope that you will be able to provide awareness through your writings.  CDH occurs on the same average as Spina Bifida and Cystic Fibrosis yet there is nowhere near the research alloted to CDH as to the two others.  This is our story.

Our daughter was born in June 1990 in Toronto, Ontario, Canada.  Within a minute of her birth, she started turning blue.  My husband was witness to this but I did not see.  She was rushed away with the nurse performing mouth to mouth.  To understand the severity of her care you need to know that I delivered on the 1st floor of the hospital and the NICU was on the 4th floor.  To this day, I do not know how the nurse got there.  I do know that she lost close to 4 minutes of oxygen.

It would be two or more hours before my husband and I were to learn of her condition.  We learned that she was born with Congenital Diaphtagmatic Hernia on the left side.  Her stomach, intestines and part of her bowel were in the cavity of her left lung.  Her left lung was the size of a pea pod and her heart was pushed to the right side of her chest.  

We had named our daughter Jessica and now the doctors were telling us that she had only a 50/50 chance of survival.  As hard as everthing was to hear, it made less sense to me as her mother as she weighed 8lb, 9oz.  We were told that if I had not had her at the hospital were she was born, she would have died.  God was with us this day.

Jessica was transferred to the Hospital for Sick Children in Toronto where she was operated on when she was 44hrs old.  She spent 22 days in hospital snd then came home with no medical intervention required.  I did  not realise then just how lucky she was to survive, but I do now. 

There was no support groups available then and Jessica was 23 when I found Cherubs.  It helped to know we were not alone.  It was disconcerting to know that in all the years since her birth that no further medical strides had been made.  Parents should not still be given 50/50% odds for their child's survival in the 21st century.  More research is needed and through your writing, you have the medium in which to help.  

Will you please help? 

Thank you from Jessica and our family for your consideration.

Sincerely,
Brigette Tophen

October 15 - Dear Nicholas Sparks

Dear Mr. Sparks,

We are down to 1 week before the 2015 Masquerading Angels Ball.

Tickets are flying, feathers from wings are all over the office (literally), plans are being wrapped up and auction items are being delivered.

It is like planning a wedding every single year.  That you ask for sponsors to pay for.   With gifts that you need donors to donate.

It's like begging for a wedding every single year.

But this is our 20th anniversary celebration and actress Patsy Pease from "Days of our Lives" is our celebrity guest.

And I don't have a date.  Because you turned me down (insert smirk with sarcasm here).   I know, I know, you have other plans already that outrank our charity event.  I agree and understand.  That just means that we will have to find some other way for you to learn about CDH, meet families and give us a chance to get you to open your heart to this cause that so badly needs your voice.

Sincerely,
Dawn M. Torrence
Tired CHERUBS President

Photo by RDU Media

Actress Patsy Pease

Photo by M. Eric Honeycutt at VegaBlue Studios

October 14 - Dear Nicholas Sparks

Dear Mr. Sparks,

Today is a personal letter from me.  

I've been separated from my second husband for six months.  Today, we settled the divorce.  It was contentious, it was a horrid marriage... I hate to speak ill of others so that is all that I will say.

Why am I sharing this with you?   Because after it was all done, after the celebratory drinks with my attorney, after all the dust settled and I sit with time to think and look at my life now... at all my life the past 25 years and where I am right now... CDH not only took my son, but it completely changed my life.

Because of CDH, I missed out on med school.

Because of CDH, I lost my only child.

Because of CDH, I was robbed of being a mom.

Because of CDH, I was robbed of being a grandmother.

Because of CDH, my first marriage disintegrated. 

Because of CDH, I lost my home through the divorce.

Because of CDH, stress is normal for me.

Because of CDH, I will grieve for the rest of my life.

Because of CDH, I never had a "normal life", especially in my 20's.

Because of CDH, I spent many years angry at the unfairness of the world.

Because of CDH, I wanted a new family to replace the one I lost and dated the wrong men because I wanted a family so badly again.

Because of CDH, I desperately wanted to be a mom again and have a family life again and married a man wearing rose colored sun glasses.  Actually, more like blinders in a dark room.  

Because of CDH, I stayed in that marriage to keep that family years longer than I should have and lived through things no one should have to endure.

Because of CDH, I gave up a "normal life" and career to run the charity; sacrificing many things like insurance, retirement, decent pay, etc.

Because of CDH, my decision making process is different than many people.  My priorities are different.  I've seen the worst the world has to offer and the best.  

Because of CDH, I saw death first hand at 19 years old and every year since.

Because of CDH, I know how to plan the funeral of a child.

Because of CDH, I will have to battle Post Traumatic Stress Syndrome for the rest of my life, though I rarely admit that because I hate to be a victim of anything.

Because of CDH, I have to force myself to be hopeful every single day.  Because I know that happy endings do not always happen.

Because of CDH, I worry about taking care of a cemetery.  I worry about who will take care of it after I die.

Because of CDH, I worry about who will take care of me when I am old.

Because of CDH, I have to think about what I say and do and write all day, every day and how it will reflect on the charity.  I live under a microscope.

Because of CDH, I have to overcome the anxiety that it gave me to do my job to battle it.

Because of CDH, I have seen, heard, held hands through, listened to, dealt with... some pretty truly horrific things personally or through other CDH families... that would shock.

Because of CDH, I don't sleep.  I have too much work to do.

Because of CDH, I have to be careful who I date.

Because of CDH, I constantly tell a sad story... and that scares many people away as dates or friends or business associates.

Because of CDH, I have to learned to deal with constant rejection because of my sad story.

Because of CDH, I know that my face, my name, my reputation will forever be entwined with grief, sickness, death.

Because of CDH, my body has changed.  I have stretchmarks and other changes from being pregnant but no child to hold now.

Because of CDH, I will never know "normal".  I will never what it was like to be up all night with a baby who wouldn't sleep, to breastfeed, to teach a child how to ride a bike, to bandage skinned knees, to give advice, to sit in the front row at a wedding crying.  

Because of CDH, I accept things that I shouldn't, I settle for less, I allow concessions in my personal life because I've never had "normal" to compare to.

Because of CDH, I will never look at a child as just a beautiful child because I will be scanning for scars, medical equipment, rashes, coughs, etc... because the mom in me will never turn off.

Because of CDH, I became a worrier.  And I never stop.

Because of CDH, I lost my innocence.  I know bad things happen.  I know the worst happens.  I can never un-know that.

Because of CDH, I will always second guess every single doctor and diagnosis for the rest of my life.

Because of CDH, I am broken.  I am patched up, glued back together and there is beauty in my scars.  But I will never be the person I was before CDH ever again.

Now, I've had many blessings and opportunities because of my charity work and that is because of CDH and I'm not discounting that.  But I would have traded it all in a heartbeat to have my son still.  To  have never heard of CDH.   That wasn't God's plans for us though.

I'm not alone.  Every parent who has dealt with CDH has their own list.  And this shouldn't be.   I don't want anyone else in my shoes. 

I could say that CDH destroyed my life but that's not true.  It changed it.  And I would not trade my son for the world.   And my life is not destroyed.  I am not destroyed.   I am happy.  I am fulfilled.  I have a long life in front of me.  I have rebuilt.  Again and again. 

But if I had never known about CDH, my life would be incredibly different.  I'd still be married to my high school sweetheart, with a family, picket fence and a dog.  Shane would be 22 years old and have graduated college by now maybe.  I'd be looking forward to being a grandmother someday. 

Because of CDH, this is where I am right now.   And I am ok with that.  This is my life and though it is different, it is good.  I am still blessed.  But I will always wonder... always want....

Sincerely,
Dawn M. Torrence
CDH mom

October 13 - Dear Nicholas Sparks

Dear Mr. Sparks,

We met again today.  Sara Hall, one of our volunteers, and I drove out to Chapel Hill to have drinks and talk with you before your book signing for "See Me".

How appropriate that that is the title of the book when we so much want the world to see these babies fighting Congenital Diaphragmatic Hernia.

To update CDH families and to have a little fun, Sara and I made a video:



The babies need us.

Sincerely,
Dawn M. Torrence Williamson
& 1000's of very determined CDH families

October 10 - Dear Nicholas Sparks

Dear Mr. Sparks,

This is how I am spending my weekend.  At my desk, watching movies of your books and catching up on this blog. 

I have been so incredibly busy that I am very behind.  But I am determined to catch up! THIS week!  

Because this project is too important.

Because these children need your voice.

Because as loud and stubborn as I am and as many incredible volunteers that we have... we are not loud enough.

Ironically as I went grocery shopping this morning before I started writing, the Outreach NC magazine was sitting on the shelf.   What a great article about you!   What incredible timing to see that on the store magazine rack.  I'm taking it as a sign. 

Sincerely,
Dawn Torrence Williamson
Dedicated CDH mom and charity president

October 6 - Dear Nicholas Sparks

Dear Mr. Sparks,

It’s been a while since I last wrote to you. Great things have been happening around the charity. We’re anxiously waiting for the Masquerading Angels Ball.

But we’ll get to those in other letters.

For now, I would like to tell you a little more about the inner-workings of the CHERUBS headquarters.

As you know, we’re based out of the endearing town of Wake Forest. I say “endearing” when in reality, this little town should be committed to an asylum. Every so often, I step out onto the street where there are pontificating seminarians, teenagers smoking cigarettes, and yoga-panted moms dripping with sweat from Zumba.

Every once in a while, we are graced by the presence of a Hispanic man with a glorious smile. He rides around town on his bicycle. Jimmy-rigged to his handle bars, he has two car speakers that blare mariachi music.

On one particular morning, this town provided me with comfort. The day before, we received news of the passing of a precious CDH baby. This hit me particularly hard and I really didn’t want to show up at the office the next morning.

After sitting at my desk in silence for a couple hours, I walked down the steps. Opening the door, I was immediately greeted by a chorus of voices bellowing the chorus to “Don’t Stop Believing.” The group was led by a tiny old man beating on a djembe, and a leather-clad, neo-punk twenty-something on guitar.

In the next instant, my feet were surrounded by a pack of dogs of all different types and sizes. They were jumping, yipping, and dancing in circles (yes, I’m talking about the dogs, but this wouldn’t be inaccurate to say about the group of hair metal bards). The mayor of Wake Forest came walking up the sidewalk with a huge smile on her face. The owner of the local coffee shop stood in his doorway watching the din. On the other side was a group of teenagers (skipping school) drawing with chalk all over the road and sidewalk.

It was lovely.

It was exactly what I needed.

This job can be difficult at times, but this event reminded me that we are in this together as a community. Not everyone knows every single detail, but we lean on each other just the same.

Sincerely,

Jason Kuehn Miller

October 5 - Dear Nicholas Sparks

Dear Mr. Sparks,

Although 13 years have come and gone, since my sweet Kaleigh was born with and then passed away from a congenital diaphragmatic hernia, the hole that was left in my heart is just the same. Nothing can ever prepare a parent for the news of their child having a devastating birth defect but even more so nothing can ever prepare you for their death. What I do know is that without CHERUBS support, I may not have been able to function at all. They have been my life line when no one else knew what to say, or do, and over these last 13 years have become family. This birth defect is to common for the world to not know what it is and it pains me that we have to scream at the top of our lungs to get our voices heard for research funding and awareness. We need our voices heard. Our babies, our children, deserve at least that much and so much more!

Sincerely,
Karen Myers

October 1 - Dear Nicholas Sparks

Dear Mr. Sparks,

It's now October.  I am ashamed to say that I have fallen behind on my daily writing.

As the only full-time person here (with 1 part-time person and many volunteers)... I am overwhelmed.  Between a patient database, speaking on research, attending conferences and the day to day work... I am overwhelmed.

But I am determined to catch up.  And members of CHERUBS are helping me.   We will fill in these days that I have missed, I am determined to do it!

You won't even know we missed them by the time we catch up.

Don't give up on us.

Sincerely,
Dawn M. Torrence Williamson
Exhausted charity president

September 30 - Dear Nicholas Sparks (Guest Blogger Caroline Lombardi)

Dear Mr. Sparks,

I would like to share the journey of our cherub, Enzo, with you:

Create your own photo slideshow

Sincerely,
Caroline Lombardi

September 29 - Dear Nicholas Sparks (Guest Blogger Shereen Kostmeyer)

Dear Mr. Sparks,

    I want to tell you about the “best case scenario” of CDH. This is the phrase that both the pediatric surgeon and the neonatologist used when it was time to release my Micaela from the NICU.  My daughter is a 17 year-old CDH survivor.  She is spunky, musically gifted, an intellectual high achiever, kind-hearted and giving, the kind of kid that everyone loves. You know, the one who has every teacher in the school wrapped around her finger.   Her personality usually fills the room the second she steps in.  That personality is HUGE, yet she is a tiny little thing at 5’1” in height.   And, she just makes me smile.

    Most CDH babies are diagnosed in utero.  Micaela is in the 15% who are not.  I was a first-time mom, and was expecting a perfectly healthy pregnancy and birth.  That was terribly naïve.  I went into labor at 33 weeks, and arrived at the hospital too late to successfully stop my contractions.  My OB doc prepared me by explaining that she would most likely be just fine, but would be transported to our closest NICU an hour away to receive the best care possible for a preemie.  She was born only 4 hours after arrival at the hospital.  She only took a couple of breaths before stopping altogether.  She didn’t even cry.  It was like a scene out of a movie, the kind of movie that may or may not have a happy ending.  

     Although the hole in Micaela’s diaphragm was small enough to be closed without the use of a GoreTex patch, it was indeed large enough to allow the migration of both her stomach and intestines into her chest.  The surgery to place the organs back into her abdomen and repair her diaphragm went beautifully.  The left lung was comparatively large and healthy.  It was explained to me that this was due to a late migration of the abdominal organs, allowing the lung to develop fairly well.  She did, however, need a small piece of it removed so as not to allow this dead lung tissue to appear like a cancerous lesion on x rays later in life.  The appendix was also removed, which I believe is performed routinely to prevent later disease.

    Nearly every day in the NICU proved to be a progressive trend towards going home.  She was gradually weaned off of the ventilator, she never needed ECMO, she graduated from the NG tube before release,  she came home completely tube-free, with only 2 oral meds for reflux.  The first 5 years of her life were a bit of a struggle with asthmatic problems, bronchial spasms, severe gastrointestinal problems, and mild reflux.  The problems became less and less frequent over the years, and she has never required any further hospitilizations or surgeries.  This IS best case scenario for Congenital Diaphragmatic Hernia.  This is as good as this birth defect can possibly be.  She knows it, and she is grateful.  She does not waste the gifts that she has been given.  In fact, she is on a mission to share her gift with the world.  And she will tell the world about her fellow cherubs.  She lives her life mindful of all of the non-survivors, and all of the babies who are FIGHTING.

    Micaela is a student in the vocal department at the Mississippi School of the Arts in Brookhaven, MS.  
She dreams of a Broadway career in musical theatre, and she will do what it takes to get there.  She is a high school senior this year, is ranked 3rd in her class, and is currently applying to college musical theatre programs.

    Mr. Sparks, thank you for your kindness.  Micaela and I humbly ask that you join us in the fight to tell the world about CDH, and the need for more research.  Just one mention of Cherubs and CDH would do a ton of good.  And thank you for bringing YOUR gift to the world.

                               

With kindest regards,

Shereen Kostmayer

Mom of Micaela Kostmayer, Cherub

Owner of Southern Bound Book Shop

Biloxi, MS

    

    

   

September 28 - Dear Nicholas Sparks

Dear Mr. Sparks,

Hello, my name Kimberly Hager and I would like to tell you little about our journey with my son Jayden.  When I first found out I was pregnant with him I was strict with everything I done!! I watches what I ate, what I was around and took my vitamins just the way my midwife told me to.  Around 18 weeks I had an ultrasound and everything was alright and I wouldn't have to go back for an ultrasound.  I was fine up until 20 weeks and I had a strange feeling to change my doctors because I felt like something was wrong!  And that was the first motherly extinct that I started to have. I had another ultrasound because the second doctor couldn't see the the kidneys very well.  After 2 days of having the ultrasound I had a call at work from my doctor Mary.  She suggested I be seen by the University of Kentucky OBGYN because my son had a Diaphragmatic Hernia. At that time I never new what that was or what that meant for my baby's future!   I was scheduled 2 weeks later and had another of a many ultrasounds. This one was performed by one of the OBGYN and she was very blunt and didn't beat around the bush to my husband, mom, mother-in-law and I that day!  She explained that Jayden would be very sick when he would be born because of how his lungs were forming and that he had a 50/50 chance at birth.  Still, at this time I was not understanding why this was happening or how!! She proceeded to tell us that there really is no known cause for this happening and suggest we speak to a geneticist to see her opinion! The geneticist really didn't do much but take our family history down and ask if we wanted to "abort" the pregnancy! NO why should we he's still got a chance he still moves and is doing fine in the womb! Days, weeks and months past and he keep growing and growing! And I knew the days were ending when I went to my 3 to last appointment and I was having contractions. I was placed in the hospital and had him at 36 1/2 weeks!  That was an exciting but also a scary day!  He was delivered via C-Section and weighing in at 8lbs .7ozs!  There were no cries or whimpers from him and no holding him in my arms for the first time. No known skin to skin contact with him. He had a breathing tube places in the OR immediately after he was born.  He was on a convictional vent for a few hours blood gases where not good so he had nitric gas and isolator that put many breathes in at a time!  Later that evening the Peds Surgery Joe Iocono and Sean Skinner came to talk to us and explained he needed ECMO!  He was placed the next day on it and was on it for 17 days!  His surgery occurred while on ECMO 2 days of being on it! He went from 8 lbs to 45lbs total of fluids!  He was giving less than a 10% chance at this time!! He recovered from that and gotten a hematoma on his back from all the blood thinners giving because of the ECMO.  It was about 6 inches across by 7 inches pretty good size!  It busted that morning they were going to go in and fix it. Doctors had told us that morning it's less than a 5% chance to survive!  We prayed and that day our little Jayden came off of ECMO! But had a very long road ahead to fight hard and get where he is today!  He stayed with the nitric gas and isolator for 2 weeks and he pulled his breathing tube out! And was placed on a conventional vent.  The doctors decided we could do all his meds and treatments at home all we had to do is maintain a good air way because he wasn't coming off the vent!  So we choice for him to have a trach and vent placed so we could go home. He never took a bottle so he had a duo tube instead of a gi tube or a NG tube. So we had to learn to take care of all this equipment plus take care of his baby needs to.  It was very hard to understand why he couldn't come off the vent. So 3 weeks prior to him being discharged they did MRI. That confirmed he had more intestines up in his chest plus his white matter of his brain was damaged therefore the doctors claimed he would walk ever or have the same abilities as other kids his age!  We were sent home to do First Steps which is a program to help kids to do therapy.  Jayden begin in October around 9 months coughing and having problems we go back to Dr Skinner and he explains after looking at an X-ray more intestines is up in his chest! We were scheduled to come back the next day and have it repaired! We had a 50/50 chance of having a reherniation or having a Bilateral Diaphragmatic Hernia which is not common to see babies survive with!   We wait like it seems forever and the doctors and nurses come out with him in his bed coming back from the OR and our Dr Iocono came to me and my husband and explained he had. Bilateral Diaphragmatic Hernia!! As for those doctors Jayden was the first baby to survive with a BiLateral meaning he had a Left and Right diaphragmatic hernia. Trach and feeding tubes came off that day through the day and about 7 months later no vent at all. And in July of 2013 he had his trach removed and started walking 2 weeks later!  To this day Jayden walks, talks, has no sensory problems more and eats whole food. We had a journey worth him but he is a fighter but a loving fighter!!! But he is the toughest kid I know because most adults couldn't take what he took. I wanted to share our journey because there needs to be more awareness of this horrible monster.  Please help us spread awareness!! Thanks so much!!!

Sincerely,
Kimberly Hager

August 10 - Dear Nicholas Sparks

Dear Mr. Sparks,

    I’ve been trying to write this letter for some time now but I wasn’t quite sure where to start.  My son is a CDH survivor.  He was born in 2008 and sailed through his recovery spending a mere twelve days in the NICU.  I don’t share his journey often.  Not many CDH babies escape their NICU stays in twelve days.  Some don’t escape at all.  I cringe when an expectant CDH mother asks me that highly anticipated question, “So, how long was his NICU stay?”  I always answer honestly and say a quick prayer that their baby’s journey will be short an uneventful.  I can’t answer why my son’s journey was so short while other babies spend months in the NICU or don’t come home at all.  It doesn’t seem fair.  Why him?  Why me? There are always questions.

    I’d love to tell you more about my son.  He’s an awesome kid.  He’s had a lot of struggles that most people don’t know about.  I won’t tell you how every meal is still a battle.  When he was a toddler I used to cry after every meal that he didn’t eat.  Did I mention all the nights I crawled into his room just to watch him breathe?  Yeah, he’s seven now and I still do it nightly.  He has a big scar on his chest that he’s just starting to ask about.  “Did it hurt when the doctor cut me open?”  “Mom, what was wrong with me?” “Why don’t you have a scar?”  He’s a boy with many questions that come at bedtime when he’s trying to fall asleep.  They continued last night after attending a fundraising event for CHEURBS.  “Mom, why does Dawn (our President) introduce me to people as a survivor?”  Then the heartbreaking question after I explained it to him, “How many didn’t survive?”  There just aren’t any words for that.

    There’s someone else I want to tell you about, my daughter.  She was four years old when her brother came along.  She was devastated to learn that her new baby brother was being transported to a big city hospital and she couldn’t see him.  She didn’t understand what was wrong with him.  A bright and highly sensitive child from birth, simply telling her he had a “boo-boo” didn’t cut it.  She felt the pain in her father’s voice when he couldn’t come pick her up to go to the hospital.  She read the sorrow and fear on her grandparents’ faces.  Today she’s the child that has been most impacted by CDH.  Strange, isn’t it?  

    My daughter has a severe anxiety disorder that manifested during my son’s first year of life.  If you met her, you’d probably be impressed by her quick wit, her ability to talk about CDH in adult terms, and you’d for sure notice and her piercing blue eyes. You’d probably say, “Wow, she how’s old?”  I’d tell you she’s eleven, she works hard at raising CDH awareness, and has had a journey I wouldn’t wish on any child.  I know that my son’s CDH did not cause my daughter’s anxiety but when I think about all the anxious ways I parented my son during his first year of life it’s no shock that she mirrored my behavior.  Ask any CDH parent when they were able to relax and I’m sure they will say NEVER.

    Mr. Sparks, it is my hope that you will read each and every letter that is posted and bring awareness to this deadly birth defect.  I hope you remember not only the babies born with CDH but the siblings that are impacted daily.  Please remember our babies in heaven and our survivors that may be facing struggles and complications today.   The fear never really goes away for all us.  Will you help?

Karla Holt

April 4 - Dear Nicholas Sparks

Dear Mr. Sparks,

Michigan proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!

This proclamation was requested on behalf of the Hawkins family!

 

 

 

Today is the 4th day of CDH Awareness Month!

 

Sincerely,

Dawn Torrence Williamson

CHERUBS President

Sincerely,

Dawn Torrence Williamson

CHERUBS President

April 3 - Dear Nicholas Sparks (Guest Blogger Felecia Woodruff)

Dear Mr. Sparks,

Today is the 3rd day of Congenital Diaphragmatic Hernia Awareness Month.

And today, our CDH families are in an uproar.   A "news reporter" wrote an Op Ed piece about Congress and included our Senate Resolution.  While that wouldn't have been bad, the article itself made light of CDH and offended many of our families.  Below is an open letter that was written by Felecia Woodruff, CHERUBS Awareness Committee Leader to the author of the article, James Warren, of New York Daily news:

Dear Mr. Warren,

Families affected by Congenital Diaphragmatic Hernia have been fighting for public Congenital Diaphragmatic Hernia Awareness for many years now. On March 25th, 2015, Senator Jefferson “Jeff” Sessions from Alabama, introduced the bill and congress approved the resolution S.Res. 115: A resolution designating April 2015 as “National Congenital Diaphragmatic Hernia Awareness Month” for the 4th consecutive year.

  Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year). The cause of CDH is not yet known. The diaphragm is formed in the first trimester of pregnancy and controls the lungs' ability to inhale and exhale. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity. This inhibits lung growth.
 

   Every patient diagnosed with CDH is different. Survival rates depend on the types and number of organs involved in the herniation and the amount of lung tissue available. There are many surgical procedures and complications that may or may not occur with each individual, including in utero surgery.

   Roughly 50% of babies born with CDH do not survive. Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems. A few of the survivors suffer from severe long-term medical issues.

   CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is very little research being done and virtually no media coverage.

A volunteer at CHERUBS- The Association Congenital Diaphragmatic Hernia Research, Awareness and Support read an article posted by James Warren at New York Daily News on March 29th, 2015 and was in total shock and disbelief that someone would poke fun of such a horrible birth defect leaving affected CDH families in tears.

The article starts off stating...

And closes with...

Comments to the article are even worse. One comment states...

"As I live and breathe! Thank you, GOP controlled Congress, for making April Hernia Awareness Month!" "Let the month of May become Clown Appreciation Month, so giant red shoes will fly off the shelves across the land and we as a nation can bow our heads in solemn prayer and gratitude to the biggest Bozo, Mr. Speaker, John "Bozo" Boehner.".

Thanks James Warren and New York Daily News for making Congenital Diaphragmatic Hernia Awareness Month a mockery. Our families deserve way better than this. These babies need to be heard. Click here to read the full article. To learn more about Congenital Diaphragmatic Hernia visit www.cdhawarenessday.org.

To contact James Warren:
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To contact New York Daily News:
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Sincerely,
Felecia Woodruff
CHERUBS CDH Awareness Committee Leader
awareness@cherubs-cdh.org