wolfhirschhorn.org

Hey everybody! My name is Charity, my sons is Karson and his dads name is Trey. He was diagnosed with Wolf-Hirschhorn 3 weeks after he was born. It came as a shock to all of us when he popped out and had a cleft lip and palate. He was rushed to Levine’s Children’s Hospital right after he was born. There we found out he had cyst’s in his kidneys and 2 holes in his heart. He wasn’t eating either; they had to put a tube down his nose. I remember talking to the genetics doctor and asking him what was the probability of this all being coincidence and him being perfectly healthy after his surgery for his lip and palate. His answer was straight to the point, “He has to many mid-line problems for there not to be something wrong.” Even after being told that I still held strong with the thought of my baby being perfectly fine. I thought that he couldn’t eat because of his missing palate and was perfectly fine with him coming home and being fed through a g-tube until all his surgeries were done. Then a few days before we came home the genetic dr. took us into a room and handed me a piece of paper and said this is what his chromosomes tell us he has.  I hadn’t even read it yet and I burst into tears. He told us that he would probably need someone to take care of him the rest of his life. I remember saying “Well what happens when me & his daddy are gone? Who’s gonna be there for him?” The genetic dr told us that if we had any more kids they could look after him. When he left we walked outside to read the paper he gave us with the information about wolf-hirschhorn. As I began to read I felt like my whole world came crashing down when I read that most don’t make it past there second year. I was so mad at everybody but especially God. I had prayed and prayed to him this whole time and it done nothing I thought. And how dare he give me my precious angel and then take him away so quickly!  I stayed mad for a really long time. Then I talked to my grandma and she made me realize that God did not put a time stamp on my child, a piece of paper did and that meant nothing. Our family has struggled with a lot and we still do struggle but in the end we wouldn’t trade our little monkey for anything!

PS I would like to add that I love reading your updates on your kids! Their all so cute!!!!