The bleeding disorders community has experienced a lot. Because their blood doesn't clot normally, they can experience bleeding into joints and soft tissues without much cause. Some lost their precious family members to HIV or Hepatitis in the tainted blood supply used in earlier treatments. We are fortunate to have safe therapies to help our boys, but it is not without a cost.
In our case, my boys, who have severe Hemophilia, need to have a constant supply of their medicine in their bodies to live normal lives. This means every other day infusions into a vein and expensive co-pays. The early years were a challenge. Sometimes swaddling my toddlers/preschoolers until they held still, exhausted from crying, so Chris or I could get a needle into a vein. Sometimes leaving a job because we had become a strain on a company's private insurance plan. Our experience now is different because both boys have learned how to self-infuse and we don't often need to get involved in that day to day care anymore. Now, we worry about advocating for the access to health care and the medicine they need and we work hard each day knowing we need to keep our jobs and insurance for them to live normal lives.
I’m all in to help support our bleeding disorders community. My personal goal is to raise as much as possible to help OHF serve the community with education, programs and advocacy. Will you help me reach my fundraising goal? It’s easy — just click “donate” to make a secure donation.
Every dollar stays within our community and supports critical initiatives such as supporting children and families who live with bleeding disorders, educating medical providers on the latest innovations and care, ensuring families have access to quality healthcare and providing access to the best educational resources available.
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."