I'm participating as a virtual walker in the Unite For Bleeding Disorders Walk in September 2019 - a fundraising event to support those living with bleeding disorders. Inherited bleeding disorders are a life-long condition. Currently there is no cure, but scientists are actively engaged in finding cures and improving treatments.
That’s why I’m raising money and I hope that I can count on your support. Thousands of families like mine across the country will benefit from your support and the success of this Walk.
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, both passed from fatal brain bleeds.
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 1980's. He passed away in September 1994, just before he turned 54.
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 (Central California Hemophilia Foundation) is here to improve their quality of life through education, advocacy and support. My father was very active in the CCHF, where my sister now serves. CCHF provides support for newly diagnosed patients and families, youth programs, education, emergency assistance and tutoring programs - just to name a few
I believe that pictures say a thousand words - below I shared a few special moments with my dad to show why this cause/event is so important to me:
(myself), Artie and Jim Carey (Don - my brother) - on their wedding Day - a new start to a wonderful life
1991 - my wedding day. After many joint bleeds, my father had to have his knee replaced. His goal post surgery was to walk me down the isle. I am blessed to have such a wonderful memory
He was not only a wonderful father, but he loved his grandchildren dearly. He didn't allow his bleeding disorder make him anything but normal to those in his life. This is one of my most treasured memories of my father with his grandson (my son) Will.
I would greatly appreciate your support. I know that many of you cannot be in Sacramento to walk on our team. But signing up as a virtual walker, or donating to myself, or anyone of our team members would be greatly appreciated.
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."