Tuesday, March 31, 2015

March 31 - Dear Nicholas Sparks

Dear Mr. Sparks,

We are gearing for April, Congenital Diaphragmatic Hernia Awareness Month! 


 It's our busiest month of the year and we are so excited to have many incredible people working together this year for the children!  We hope that you will join us!

Sincerely,
Dawn M. Torrence Williamson
CHERUBS President

Monday, March 30, 2015

March 30 - Dear Nicholas Sparks

Dear Mr. Sparks,

My posts have gotten behind and shorter because life has taken a turn and other things needed my attention.

The main reason I am behind is a personal one.   My fairy tale has ended, my marriage is ending in divorce.  I had to walk away from a very bad situation and now I am rebuilding my life from scratch.  Again.  I am grieving the loss of my family.  Again.  I am grieving sons.  Again.   I don't even believe in divorce but here I am.  Again.   Divorce is devastating and it drains you emotionally, physically, financially.  I have my faith, I know I will be ok.   I have survived much worse. 

What I am going through right now is what many CDH families go through, not just because of the high rate of divorce but dealing with CDH itself is emotionally, physically and financially draining.

I cannot save my marriage but I can help CDH families.   And so can you.   Your voice will make the burdens that these families face lighter.

Sincerely,
Dawn M. Torrence Williamson
Determined woman

Sunday, March 29, 2015

March 29 - Dear Nicholas Sparks

Dear Mr. Sparks,

Arkansas Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!


This proclamation was requested on behalf of the Mason family!

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Saturday, March 28, 2015

March 28 - Dear Nicholas Sparks

Dear Mr. Sparks,

Texas Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!


This proclamation was requested on behalf of the Hawkins family!

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Friday, March 27, 2015

March 27 - Dear Nicholas Sparks

Dear Mr. Sparks,

Arizona Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!


This proclamation was requested on behalf of the Young family!


Sincerely,
Dawn Torrence Williamson
CHERUBS President

Thursday, March 26, 2015

March 26 - Dear Nicholas Sparks

Dear Mr. Sparks,

A wonderful thing happened on Capitol Hill today!

WASHINGTON—U.S. Senator Jeff Sessions (R-AL) issued the following statement today after the Senate unanimously passed his resolution designating April 2015 as National Congenital Diaphragmatic Hernia Awareness Month. Sessions’ grandson, Jim Beau, was born with CDH:

“Congenital Diaphragmatic Hernia is a dangerous birth defect that affects 1 out of every 2,500 babies born each year, yet most people have never heard of it. It is as common as cystic fibrosis and can be deadly.

CDH occurs when a child’s diaphragm does not fully develop, which allows abdominal organs into the chest cavity, preventing healthy lung growth. Complex surgeries can be required, and survivors sometimes face long hospital stays or dependence on ventilation machines.

There is no known cause of CDH, but early detection and good prenatal care can catch the defect early. And, constantly improving medical treatments—together with increased public awareness and research towards a cure—can help children born with CDH live healthy lives unencumbered by their birth defect. I’m glad the Senate has again declared a full month for CDH awareness, and I thank Sen. Cardin for joining with me in this important effort. The resolution builds on the life-saving work done every day by CHERUBS, the Association of Congenital Diaphragmatic Hernia Research, Awareness and Support.”




Text of A resolution designating April 2015 as “National Congenital Diaphragmatic Hernia Awareness Month”.


This simple resolution was agreed to on March 25, 2015. That is the end of the legislative process for a simple resolution. The text of the bill below is as of Mar 25, 2015 (Resolution Agreed to).





III
114th CONGRESS
1st Session
S. RES. 115
IN THE SENATE OF THE UNITED STATES
March 25, 2015
(for himself and Mr. Cardin) submitted the following resolution; which was considered and agreed to

RESOLUTION

Designating April 2015 as National Congenital Diaphragmatic Hernia Awareness Month.

Whereas congenital diaphragmatic hernia (referred to in this preamble as CDH) occurs when the diaphragm fails to fully form, allowing abdominal organs to migrate into the chest cavity and preventing lung growth;

Whereas the Centers for Disease Control and Prevention recognizes CDH as a birth defect;

Whereas the majority of CDH patients suffer from underdeveloped lungs or poor pulmonary function;

Whereas babies born with CDH endure extended hospital stays in intensive care with multiple surgeries;

Whereas CDH patients often endure long-term complications, such as pulmonary hypertension, pulmonary hypoplasia, asthma, gastrointestinal reflex, feeding disorders, and developmental delays;

Whereas CDH survivors sometimes endure long-term mechanical ventilation dependency, skeletal malformations, supplemental oxygen dependency, enteral and parenteral nutrition, and hypoxic brain injury;

Whereas CDH is treated through mechanical ventilation, a heart and lung bypass (commonly known as extracorporeal membrane oxygenation), machines, and surgical repair;

Whereas surgical repair is often not a permanent solution for CDH and can lead to reherniation and require additional surgery;

Whereas CDH is diagnosed in utero in less than 50 percent of cases;

Whereas infants born with CDH have a high mortality rate, ranging from 20 to 60 percent, depending on the severity of the defect and interventions available at delivery;

Whereas CDH has a rate of occurrence of 1 in every 3,800 live births worldwide;

Whereas CDH affects approximately 1,088 babies each year in the United States;

Whereas CDH has affected more than 700,000 babies worldwide since 2000;

Whereas CDH does not discriminate based on race, gender, or socioeconomic status;

Whereas the cause of CDH is unknown;

Whereas the average CDH survivor will face postnatal care of at least $100,000; and

Whereas Federal support for CDH research at the National Institutes of Health for 2014 is estimated to be not more than $2,500,000: Now, therefore, be it

That the Senate—

(1) designates April 2015 as National Congenital Diaphragmatic Hernia Awareness Month;
 
(2) encourages that steps should be taken to—


(A) raise awareness of and increase public knowledge about congenital diaphragmatic hernia (referred to in this resolution as CDH);
(B) inform all Americans about the dangers of CDH, especially those groups that may be disproportionately affected by CDH or have lower survival rates;
(C) disseminate information on the importance of quality neonatal care of CDH patients;
(D) promote quality prenatal care and ultrasounds to detect CDH in utero; and
(E) support research funding of CDH to—


(i) improve screening and treatment for CDH;
(ii) discover the causes of CDH; and
(iii) develop a cure for CDH; and
(3) calls on the people of the United States, interest groups, and affected persons to—


(A) promote awareness of CDH;
(B) take an active role in the fight against this devastating birth defect; and
(C) observe National Congenital Diaphragmatic Hernia Awareness Month with appropriate ceremonies and activities.
 
The statistics written in this Resolution were written by our charity.  Never in a million years did that 22 year old mom who started CHERUBS ever think my words would show up in a United States Senate Resolution.   This is the forth year that Sen. Sessions has sponsored a Resolution for us and every year, it still brings me to tears that our children have a voice on Capitol Hill.


God bless Sen. Sessions for all he does for our children.

Sincerely,
Dawn Torrence Williamson
Very Proud CHERUBS President




Wednesday, March 25, 2015

March 25 - Dear Nicholas Sparks

Dear Mr. Sparks,

Kansas Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!


This proclamation was requested on behalf of the Koenig family!

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Tuesday, March 24, 2015

March 24 - Dear Nicholas Sparks

Dear Mr. Sparks,

Pennsylvania Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!



This proclamation was requested on behalf of the Cummings and Woodruff families!


Sincerely,
Dawn Torrence Williamson
CHERUBS President

Monday, March 23, 2015

March 23 - Dear Nicholas Sparks

Dear Mr. Sparks,

Florida Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!


This proclamation was requested on behalf of the Myers and Trodglen families!

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Sunday, March 22, 2015

March 22 - Dear Nicholas Sparks

Dear Mr. Sparks,

Murray, Utah Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!


This proclamation was requested on behalf of the Hensley family!

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Saturday, March 21, 2015

March 21 - Dear Nicholas Sparks

Dear Mr. Sparks,

Philadelphia, Pennsylvania Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!


This proclamation was requested on behalf of the Stawartz and Woodruff families!

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Friday, March 20, 2015

March 20 - Dear Nicholas Sparks

Dear Mr. Sparks,

Utah Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!


This proclamation was requested on behalf of the Hensley family!

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Thursday, March 19, 2015

March 19 - Dear Nicholas Sparks

Dear Mr. Sparks,

Salt Lake City, Utah Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!

This proclamation was requested on behalf of the Hensley family!

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Wednesday, March 18, 2015

March 18 - Dear Nicholas Sparks

Dear Mr. Sparks,

Oregon Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!

This proclamation was requested on behalf of the Moore and Gilbert families!

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Tuesday, March 17, 2015

March 17 - Dear Nicholas Sparks

Dear Mr. Sparks,

Happy St. Patrick's Day!   I recently found out that I am almost half Irish so I feel that I can now celebrate the holiday with more meaning this year.

For St. Patrick's Day, fellow CHERUBS member and dear friend, Laura, came over and we watched the 3 HOUR long video of our trip to Ireland last year for the CDH Conference.   Because we take way too many photos!   But it was the trip of a lifetime, how could we not?  Here are some of my favorites as we raised CDH Awareness across the Emerald Isle with many other CDH families:
















I love being an American but I also love Ireland.   Someday I hope to retire there.   It's amazing how heredity can pull your heart across an ocean.

Happy St. Patrick's Day!


Sincerely,
Dawn Torrence Williamson
Irish CDH Mom

Monday, March 16, 2015

March 16 - Dear Nicholas Sparks

Dear Mr. Sparks,

Wisconsin Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!


This proclamation was requested on behalf of the Zimmerman family!

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Sunday, March 15, 2015

March 15 - Dear Nicholas Sparks

Dear Mr. Sparks,

Hoover, Alabama Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!


This proclamation was requested on behalf of the Maalouf family!


Sincerely,
Dawn Torrence Williamson
CHERUBS President

Saturday, March 14, 2015

March 14 - Dear Nicholas Sparks

Dear Mr. Sparks,

North Wilkesboro, North Carolina Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!


This proclamation was requested on behalf of the Younce family!

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Friday, March 13, 2015

March 13 - Dear Nicholas Sparks

Dear Mr. Sparks,

Anchorage, Alaska  Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!


This proclamation was requested on behalf of the Brown family!

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Thursday, March 12, 2015

March 12 - Dear Nicholas Sparks

Dear Mr. Sparks,

Thibodaux, Louisiana Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!

This proclamation was requested on behalf of the Gros family!

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Wednesday, March 11, 2015

March 11 - Dear Nicholas Sparks

Dear Mr. Sparks,

The Cummings Center in Beverly, Massachusetts will light up on April 19th in support of Congenital Diaphragmatic Hernia Action Day!

Photo courtesy of www.cummings.com
The Cummings Center in Beverly, Massachusetts will light up pink, blue and yellow on April 19th, 2015 in support of Congenital Diaphragmatic Hernia Action Day!

Special thanks to everyone at Cummings Properties, Kim Gannon, and David Boyd (CHERUBS Members and Mom and Dad of Angel Cherub Aaron) for taking action against Congenital Diaphragmatic Hernia.

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Tuesday, March 10, 2015

March 10 - Dear Nicholas Sparks

Dear Mr. Sparks,

The mayor of Quinlan, Texas Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!


This proclamation was requested on behalf of the Hawkins family!

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Monday, March 9, 2015

March 9 - Dear Nicholas Sparks

Dear Mr. Sparks,

The Retirement Systems of Alabama buildings in Montgomery and Mobile will light up on April 19th, 2015 in support of Congenital Diaphragmatic Hernia Action Day!

Photo courtesy of www.rsa-al.gov
Special thanks to The Retirement Systems of Alabama and CHERUBS Alabama State Representative Teresa Meherg for taking action against Congenital Diaphragmatic Hernia. 

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Sunday, March 8, 2015

March 8 - Dear Nicholas Sparks

Dear Mr. Sparks,

Alberta Health Services, Glenrose Rehabilitation Hospital will light up on April 19th, 2015 in support of CDH Action Day! Click here for more information about Alberta Health Services, Glenrose Rehabilitation Hospital.

Photo courtesy of www.albertahealthservices.ca

Special thanks to the Alberta Health Services, Glenrose Rehabilitation Hospital and Amanda Plakholm for taking action against Congenital Diaphragmatic Hernia.

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Saturday, March 7, 2015

March 7 - Dear Nicholas Sparks

Dear Mr. Sparks,

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


This proclamation was requested on behalf of the Jones family!

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Friday, March 6, 2015

March 6 - Dear Nicholas Sparks

Dear Mr. Sparks,

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



This proclamation was requested on behalf of the Colvin family, in memory of their sweet Kasey. 

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Thursday, March 5, 2015

March 5 - Dear Nicholas Sparks

Dear Mr. Sparks,

The mayor of Peoria, Illinois proclaimed April 19th a day to take action to help CDH babies!



This proclamation was requested by Kristin Aigner, CDH nurse and sister to a cherub!

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Wednesday, March 4, 2015

March 4 - Dear Nicholas Sparks

Dear Mr. Sparks,

On April 19th, Niagara Falls will illuminate Blue, Amber, Red at 10:00 pm - 10:15 pm in support of Congenital Diaphragmatic Hernia Action Day!



Special thanks to Illumination of the Falls, The Niagara Falls Illumination Board, and CHERUBS Awareness Committee for raising Congenital Diaphragmatic Hernia Awareness!

How amazing is this???

Sincerely,
Dawn Torrence Williamson
CHERUBS President

Tuesday, March 3, 2015

March 3 - Dear Nicholas Sparks (Guest Blogger Cassandra Carter)


Hi Mr. Sparks,

My name is Cassandra (Casey) Carter. If you saw me on the street I would seem like any other normal adult who might be a little too loud. What you would not see from just looking at me is that I am my parent’s miracle child. You have read both of their stories in earlier posts. What you would not see are the two large scars I have, one right under my left rib cage and one that goes right down the middle of my stomach. What you would not see is how lucky I am to be able to call myself a fighter and survivor. What you would not see is that I am able to bring hope to other parents. The reason being, I am a 28 year old left sided CDH (Congenital Diaphragmatic Hernia) survivor. This is my story and journey from my view with CDH. Of course, I don’t remember my birth, but I do know me and I can be somewhat dramatic. So I know that I needed to make my entrance into this world a big one and believe me, it was very grand and dramatic but not in the way it should have been. Here is my story.

Growing up, we all ask to hear different stories and normally it is our favorite one. Well, I would do the same thing only this story was about me and my fight for survival when I was born. Every year on my birthday, I would always ask my mom to tell me my miracle story. She would tell me how special I was because I only had a 5 percent chance of survival. See, I was born with a hole in my diaphragm and some of my abdominal organs were in my chest cavity. I ended up having to have surgery when I was 3 hours old and ended up being in the hospital for only 11 days, another miracle, as most baby’s hospital stays last for weeks or months. During that time I had to fight to live, it would be my biggest battle I have ever had to do. Looking at the pictures they had of me, which are many, because I have always loved to have my picture even with all the tubes and wires and what not, I would ask about all the tubes and different things that were attached to me. One of these things that I always found funny was a little paper cup on my head. You may be wondering why. Well let me back up a bit I was born on Dec 30th right before New Year’s Eve, so my dad could get a tax write off. So I would always ask about the cup on my head and my dad would say don’t you know that was your party hat for the New Year. I thought that was so funny. I still think it is, I am laughing right now while thinking about it. I had it there because I kept trying to take out my IV. Then after what my mom calls the longest 11 days of our lives, they were able to finally bring me home. Though I did end up having to have more surgeries later on due to my original surgery at birth. I had one when I was 18 months old and one when I was 23 years old. Both surgeries were due to bowel obstructions caused by scar tissue. Now if you ask me the one from when I was 23 years old was soooo more painful. I also have asthma, dyslexia, and ADD which we don’t know if that is from the CDH or not. It seems that many other kids with CDH also have these issues as well.

Now growing up hearing my story was AWESOME because I knew it made me one lucky kid/ adult to be alive. So I never had an issues showing off my scars to people whether they wanted to see them or not. I do remember one time when someone else had an issue with it. I was at a water park around middle school age and this girl about my same age asked me why in the world I would wear a bikini with such ugly and big scars on my belly. So I looked at her like she was crazy because I did not know who she was or what she was talking about. Because to me my scars are not ugly. My response, which may have been overly dramatic, because that’s me, I told her without them I would be dead, so I am quite partial to them and love them. They make me who I am. I told her my story then. I then watched her jaw drop. She was very impressed that I embraced them rather than hid them from the world. I still do.

Now we fast forward to 5 years ago. After my last surgery, my mom started researching about CDH affects adults online. That is where she found CHERUBS. Almost two years after that I was able to go to DC and meet many people in my CHERUBS Family. It was amazing to be able to talk to and hear other CDH stories and meet other survivors, although I was one of the oldest there. Since then I have been able to attend several other functions with CHERUBS and have become one of the Co-Reps for Texas. One thing you will learn fast is each family’s story is different but they all know what you’re going through or have gone through.

So I am asking you Mr. Sparks, please help us to show the world how strong and how hard these babies fight. I know how hard they fight and how strong each and every single CHD baby is. I lived it. We would be forever thankful if you could help us spread awareness. 

Sincerely,
Cassandra "Casey" Carter
CDH Survivor

Monday, March 2, 2015

March 2 - Dear Nicholas Sparks (Guest Blogger Connie Springs)

Dear Mr. Sparks,


On December 30, 1986 I first learned of CDH.  I had waited in":Grandmotherly" anticipation for the birth of my granddaughter and that day started out to be a happy, jolly, laughing family gathering that consisted of my daughter,in,law, Lisa Carter, my son, Phil Carter, Lisa's mother, Midge Taylor, Lisa's son, Joe and me, Connie Springs..  All of the wonderful celebration came crashing down when Cassandra was born and diagnosed with CDH.

After her birth, the nurses recognized that she was in distress and they allowed Lisa to hold her for a few minutes before rushing Cassandra to the hospital Nursery .  They took time to weigh her before starting X-rays.  They called her Pediatrician  and he arrived immediately, diagnosed her problem and ordered an ambulance to take her to Children's Hospital in Dallas, Texas.

I overheard a conversation between Phil and the doctor and Hernia was mentioned.  I had heard of babies being born with a Hernia but it was not considered a serious condition. I was not concerned until a nurse asked me,"Who is with the mother?"  I replied that her mother and son were with her.  Then, the nurse,made a statement that convinced me that Cassandra's condition was very serious when she said, ":Someone should be with the father also!"

The minister at the hospital arranged for a taxi to take me to Children's.  Before I left, the two brokenhearted Grandmothers met in a bathroom and consoled each other with words of comfort but our hopes and dreams dissolved into anxiety, fears and tears.

Shortly after I arrived at Children's Hospital we saw Cassandra as they took her into Surgery.  One can never be prepared to see an infant granddaughter, just four hours old, on her way to surgery or to see her afterwards, knowing the odds are stacked against her.  Sweet little babies, tubes, tubes, tubes.

We give God the praise that we can say, "Cassandra is a survivor!"  We also grieve with the parents of Cherubs that "fly away" ,  We believe that God has prepared a special place for these precious babies.

Many prayers were said on Cassandra's behalf and friends were very supportive.
This poem was written to my Sunday School Class after I returned to my home.

"Oft times we take for granted
friendships we hold so dear
But when the occasion arises
we find we need friends near
Though miles may separate us
we're close in thoughts and prayer
And it comforts one to know
that friends are really there
My gratitude to each of you
is exceeded only by my love
Another gift we're given
from our God above
I can't express the joy
for the blessings that God gives
for many prayers were answered
And our dear Casey lives.

Sincerely,
Connie Springs

Sunday, March 1, 2015

March 1 - Dear Nicholas Sparks

Dear Mr. Sparks,

We are so very busy around there preparing for "Congenital Diaphragmatic Hernia Awareness Month" in April and CDH Action Day on April 19th!  

One of the things that I love to do, but don't have time to do as much as I'd like, is to make graphics to help raise awareness for our cause.

This is something that took a long time to put together but that we hope to use for many years to come:

(click to see full-size)

We have an amazing new CDH Awareness Team this year, headed by Felecia Woodruff, who is working so hard to help our children.  I am very excited all the things to come!

Sincerely,
Dawn Torrence Williamson
CHERUBS President