I am excited to participate in CCHF's 2nd Annual Unite for Bleeding Disorders Walk in honor of my dad Jim Carey.
My dad was born in 1940, the youngest son in a family of three boys. Although their was no known family history of bleeding disorders all three of the boys were born with hemophilia. The hemophilia meant that they would bleed internally in their joints and the scariest possibility was a brain bleed. In the early years their bleeds could only be treated with whole plasma infusions. Later, doctors figured out that there were actually two different types of hemophilia. My dad and his brothers had hemophilia B - meaning they didn't have clotting factor 9 in their blood. Eventually new therapies were developed so my dad could treat himself at home by infusing a factor 9 product. Unfortunately, neither of his older brothers (Donny and Bobby) survived into their teen years. Bobby died at age 2 or 3, while Donny lived until he was 14.
Sadly, like many people with hemophilia, the medicine my dad took to prevent and treat his bleeding caused him to be infected with HIV and Hepatitis C during the 1980s. He passed away in September 1994, just before he turned 54 and shortly before my 19th birthday.
Treatments today have advanced significantly and now many people with hemophilia are living into their later years and some patients are now participating in gene therapy trials which may eventually result in a cure. In the meantime, all those affected by bleeding disorders continue to face challenges and CCHF is here to improve their quality of life through education, advocacy and support. We provide support for newly diagnosed patients and families, youth programs, education, emergency assistance and tutoring programs - just to name a few.
CCHF's camp program sent over 30 children and teens with bleeding disorders to camp this summer - a unique opportunity to interact with peers facing similar challenges and it is at camp that many kids learn to self-infuse.
I would greatly appreciate your support. You can sign up to walk on our team, sign up as a virtual walker if you're not able to attend in person or donate to anyone of our team members. You could also create your own team or sign up as an individual walker. Thank you for helping us reach our fundraising goal! Together we can make a difference in the lives of those living with bleeding disorders.
The National Hemophilia Foundation is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. "Coming together is a beginning. Keeping together is progress. Working together is success."