Wednesday, September 25, 2013

Did you know....

I am working on finishing up a project that has been in the works for awhile now with our local Discovery Museum.  It's a hands on museum for our children and it's such a great place to take your kids on rainy days.  We have built (or should I say, Allyn Roe and his wonderful family) a lite brite wall with heart shaped cubbies and a heart on the actual wall in honor of Raygen and all her CHD warriors.  I can't wait to see the finished project and post pictures.  This is so exciting.  I love spreading awareness and honoring all our CHD kids.  The wall will be named "Raygen's Lite Brite" so I am putting together a photo collage of her story so far and a sweet and short summary of her journey till now.  With this I am posting some CHD facts and this will be hung next to the lite brite wall so everyone will learn a little about the girl it's for and about CHD.
I will post pictures as soon as I see it for myself.  The lite brite wall will also be at the Onalaska Apple Harvest Festival on the 5th so please stop by and take a look.  We will also be working with our local paper to let everyone know when its at the museum.  Thank you so much to EVERYONE who made this possible and especially the Roe family.  None of it would be possible without you.
Here are some surprising facts I found so far.
1.There are more than 40 different types of CHD (Congenital Heart defects.)
2. There is no prevention or cure for any of them.
3.More than 50% of all children born with a CHD will require at least 1 invasive surgery in their lifetime.
4. In the United States, twice as many children die from CHD each year then from all forms of childhood cancer combined, yet funding for pediatric cancer research is 5 times higher then funding for CHD.
5. 1% of all babies born will have a heart defect of some sort.
6. Only 1 penny of every $1.00 donated to the American Heart Association goes towards CHD research.
7. 1 out of every 100 babies born will have a heart defect.
8. CHD is the most common birth defect in the US.
9.Each year approx. 40,000 babies are born in the US with a CHD and more then 4,000 babies born with CHD will not reach their first birthday.  Thousands more die before they reach adulthood.
I found these facts at
Coming from a mom of a daughter with CHD, these facts are so scary.  Crazy that I didn't know any of this till I found out about Raygen's heart.  Why is it there is nothing out there letting people know about this?  If CHD is the number 1 birth defect in the United States, don't you think more people should know about it? 
I want something good to come from Raygen's journey.  She deserves the best this life can offer her and I plan on giving it to her and along the way hopefully help some fellow heart friends.  These kids deserve the research and funding and a cure.  If Raygen had a heart transplant today it is possible that within the next 10 to 15 years she would need another one.  At one point her body would reject the heart even with anti-rejection meds.  So the longer Raygen can live with "her" heart the better and to make that possible CHD needs more funding.