I'm excited to join my family's team in honor of my late husband, Jim Carey (Husband, Father, Uncle, and Grandfather) for CCHF'S Second Annual Unite for Bleeding Disorders walk on September 22, 2019
Jim was born in 1940, youngest son in a family of 3 boys. Although there was no known family history of bleeding disorders, all three 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 there were two different types of hemophilia. Jim and his brothers had hemophilia B - meaning they didn't have clotting factor 9 in their blood. Eventually, new therapies were developed so my late husband 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 Jim took to prevent and treat his bleeding caused him to be infected with HIV and Hepatitis C during the 1980s. He passed away on September 21, 1994 a few months after we celebrated our 22 wedding anniversary and just before he turned 54.
Jim was very active in CCHF, where our daughter is now serving as the Exective Director.
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. CCHF provides 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 30 children to Camp Hemotion this summer. This is a unique opportunity for them to be with peers facing similar challenges and it is at camp that many kids learn to self-infuse.
Will you join me in us in supporting this important cause? Make a donation to my walk page, or join our team as a walker or virtual walker. Thank you in advance for supporting me and helping us reach our fundraiser goal.
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."