There was a time not so very long ago when the outlook for someone with a diagnosis of hemophilia was very grim. Until the discovery of cryoprecipitate in the 1960s and later antihemophilic clotting factor, there was virtually no treatment for this condition.
Thanks to considerable research and treatment advances, the picture today is as different as night and day. With current treatments, the vast majority of individuals with hemophilia can live long, fulfilling lives. However, better treatments are not a cure. Treatment requires ongoing intravenous infusions of clotting factor which are expensive, disruptive and painful. Many still deal with the immune response to clotting factors known as inhibitors which can lead to continued bleeding and joint damage. In a few rare cases, the complications can be even more severe.
Eshton Scott of Genesee, MI was one of those rare cases. Eshton died of complications of his hemophilia on Wednesday, April 6, 2011 at the tender age of 16. From his obituary: “He touched and influenced more people in his short 16 years of life than most people do in a lifetime. He touched everyone's heart that met him. He fought a good fight.”
Eshton was not shy about his hemophilia. A video made by those closest to him includes footage of him demonstrating how he regularly infused clotting factor – something he needed to do more frequently than most because of his complications. The video is posted on Facebook and can be viewed by clicking here.
In Eshton's memory the family is requesting people to become organ donors. For anyone who is already an organ donor or who would like to do more, contributions may be made to Eshton Hewitt Quality of Life Memorial Fund thru the coalition for Hemophilia B, Attention: Kim Phelan, 825 3rd Ave., Ste. 226, New York, NY 10022.
Individuals with hemophilia need better treatments, and ultimately a cure. That’s why national and local hemophilia organizations exist, and that’s why members of our New York City community will be walking on June 5th. Please join us at the Walk this year, and please remember all of the individuals young and old - in New York, in Michigan and around the world – for whom research for a cure can’t happen quickly enough.
