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