This is a rare bleeding disorder, when you do not have a clotting factor in your body to stop bleeding. This is something he will not grow out of, but will continue to be a great challenge for him. On May 18th, 2004 we welcomed our first son into the world. The day after he was born he became pale, found to have low blood counts and bleeding between his skull and scalp and remained in the intensiv
e care unit for a very long 2 weeks. This became the beginning of a very long journey to protect and keep Christopher out of harms way. Without putting him in a “bubble”, our family and I dedicated every hour of everyday to keep him safe. At a year old and numerous big lumpy bruises later, Christopher was diagnosed with an inhibitor. An inhibitor is a complication were the body builds a resistance or antibody to the Factor 8 he would need to receive for any bleeding. So as we hit another bump in the road, more fear and worry for a very active toddler learning to crawl and walk, striving just to be like every other child. At 15 months old Christopher had a seizure, was rushed to the hospital and found to have a spontaneous head bleed. We spent 4 weeks in the hospital, luckily escaping brain surgery. At that time Christopher had a mediport placed in his chest, in order to infuse him on a daily basis to prevent any bleeding. Finally he came home and recovered without any disabilities. We infused him at home every other day until his inhibitor level went low enough to start him on an immune tolerance- which meant giving him large amounts of factor 8, trying to over ride his body of the inhibitor. Finally immune tolerance was started and his body began to accept some Factor 8, giving him some protection from bleeding easily. I am happy to say after a very bumpy start, Christopher is a very healthy active 6 year old. He is in the first grade at West End Elementary School. He continues to receive high does of Factor 8, doses a 160lb adult male should be getting, through his mediport, giving him some protection. He still has a long way to overcome the inhibitor to the appropriate levels. Right now the only way to replace Factor 8, a blood product, is intravenously. This is a big challenge in children with their small veins and some adults, with such frequent infusions. It is so important for research, funding and education all needed to get closer to a cure. We would not have the treatment we have today if it wasn’t for the funding for research that is essential to continue to move closer to a cure. That is why I am asking you today for your support and donations in any way you can to raise money for the 6th annual Walk Along The River, Riverside Park, NYC. This walk is to raise money for The National Hemophilia Foundation. Christopher has been involved in the walk for the past 5 years. The walk was started by a family in the city who has a son also with severe hemophilia. It started as a small walk with his preschool and as word of mouth spread the annual walk became bigger and two years ago The National Hemophilia Foundation became involved and made the walk a national event across the country. Christopher has his own team - CHRISTOPHER’S CREW, as a super hero himself! Christopher is a healthy, happy first grader because of all of the advances in treatments and therapies. This needs to continue to ensure a long healthy life. Everybody’s support helps to make sure we get closer to a cure that is desperately needed! Thank you for visiting my personal Fundraising page! Please help me reach my goal by making an online gift today! Through our combined efforts we can make a HUGE difference. Please join our team today!
