Dear Friends,
I am writing this to share with you a mission dear to my heart.
My son has a severe bleeding disorder called hemophilia.
He has less than 1% clotting protein in his blood.
Also my little brother (he’s 39 years old) also has
hemophilia. Hemophilia is part of who I am, who we are
as a family; it’s in my blood, and forever in my heart.
The struggles of the bleeding disorder community both
past and present are immense. In the 1980’s, 90% of
severe hemophiliacs were infected with HIV due to
tainted blood products used during treatment.
Now, after many young teenage boys and men died
of AIDS (over 50% died), many live with HIV, and
oftentimes Hepatitis C as well.
Today my son has many advantages that the kids in the
last generation did not have. He has a better chance of
being treated early for joint bleeds, having healthy joints
and staying safe from blood borne viruses. For this we are
grateful, but there are new struggles. The cost to treat our
kids is astronomical; it costs $1,300 for each infusion
(infusion of medicine into his vein stops a bleed).
Our physician wants us to treat three times a week
(the average cost is $200,000 per year). We are on the
very low end of what most families with hemophilia face.
It’s not unusual for the kids to use up their 1 million dollar
health insurance cap by the time they are three years old or
younger.
The emotional and social aspects are challenging as well
in this community. We know young men struggling with HIV
and Hepatitis C while trying to raise their small children,
young families who went bankrupt because of their medical
bills, toddlers with arthritis and young men in there 20’s who
needed joint replacements.
As a family, we decided to be active participants in this
community and support the Black and Blue fundraiser which
benefits the Hemophilia Society of Colorado. All proceeds
benefit persons and families with bleeding disorders
through educational programming, financial assistance
and support services.
On behalf of our family and others, thank you for your
consideration in helping us advocate for the hemophilia
community.
For more Info on how you can help go to www.cohemo.org
Dear Friends,
I am writing this to share with you a mission dear to my heart. My son has a severe bleeding disorder called hemophilia. He has less than 1% clotting protein in his blood. Also my little brother (he’s 39 years old) also has hemophilia....">
Dear Friends,
I am writing this to share with you a mission dear to my heart. My son has a severe bleeding disorder called hemophilia. He has less than 1% clotting protein in his blood. Also my little brother (he’s 39 years old) also has hemophilia....">
Dear Friends,
I am writing this to share with you a mission dear to my heart. My son has a severe bleeding disorder called hemophilia. He has less than 1% clotting protein in his blood. Also my little brother (he’s 39 years old) also has hemophilia....">
