Alicia Mom to 5 Children, 2 with Hemophilia
In November 1995 I found out my 9 month old son Andrew had hemophilia. Hemophilia is a inherited bleeding disorder where the blood is missing a protein that helps it to clot properly. After further testing, my son Tony was diagnosed as well. I thought the doctors were handing us a death sentence. They were going to have to be infused in their veins with clotting factor the rest of their lives. I was afraid for them- not knowing what kind of future thay would have. I had heard horror stories about hemophiliacs contracting AIDS and dying alone & in pain. I felt so gulilty thinking I had done something to cause this. After learning about the genetics and treatment options we began to breathe alittle easier.
Since that day I can finally admit that I am not afraid anymore. I know what I need to- although I find out new things all the time. I have a great family & support system to help me deal with this disorder and all the issues we face. There were countless visits to the ER, long nights spent next to hospital beds, and ignorant people who thought they could "catch it" by touching them. My sons are healthy and well- adjusted. The factor they use to clot their blood is one of the purest products out there. And I can honestly say I feel blessed that God thought I was fit to take care of these boys- not to mention my other 3 children.
On September 18th Illinois will have it's first Hemophilia Walk. Our goal is raise money, but also awareness for hemophilia and other bleeding disorders. We are a community of fighters and conquerors. We have faced many obstacles but continue to strive for educating the public and increasing the quality of life for those with blood disorders. Hemophlia is not a death sentence. And we are walking to prove that.
Learning all I have about the disorder has given me power. Linking up
with other families who deal with the same issues has given me strength. Hearing about genetic research and possibly a cure has given me hope. Trusting God with our future has given me peace.
Since that day I can finally admit that I am not afraid anymore. I know what I need to- although I find out new things all the time. I have a great family & support system to help me deal with this disorder and all the issues we face. There were countless visits to the ER, long nights spent next to hospital beds, and ignorant people who thought they could "catch it" by touching them. My sons are healthy and well- adjusted. The factor they use to clot their blood is one of the purest products out there. And I can honestly say I feel blessed that God thought I was fit to take care of these boys- not to mention my other 3 children.
On September 18th Illinois will have it's first Hemophilia Walk. Our goal is raise money, but also awareness for hemophilia and other bleeding disorders. We are a community of fighters and conquerors. We have faced many obstacles but continue to strive for educating the public and increasing the quality of life for those with blood disorders. Hemophlia is not a death sentence. And we are walking to prove that.
Learning all I have about the disorder has given me power. Linking up
with other families who deal with the same issues has given me strength. Hearing about genetic research and possibly a cure has given me hope. Trusting God with our future has given me peace.