Growing up in the 1980s, childhood would be complicated for Heather Brinkley. Both of her brothers, William and Aaron, have Hemophilia Factor IX severe.
“When the boys would have a bleed it meant a trip to the emergency room for treatment. They were treated on-demand only, my Dad always thought they should treat the boys before baseball games to help prevent injury. The things that stick out the most to me as we were growing up were the bruises. My brothers were covered head to toe with them. The scariest thing that happened was the AIDS epidemic.To know that they could contract HIV and/or AIDS just from a single infusion was so scary.”
There were some bright spots, being involved in the Virginia Hemophilia Foundation.
“My fondest memory is that one weekend we all got to go to a Family Camp at Camp Holiday Trails and it was a great adventure. My parents were also involved in the local Hemophilia Chapter. My brothers were able to attend Camp Holiday Trails for many years and later became counselors there.”
When Heather got ready to plan for a family, she would be prepared. Her second son, Liam, has Hemophilia Factor IX severe as well. His quality of life growing up has been much different:
“Liam has been on prophy for 4 years now and he has less bruises and only a couple of bleeds. I think this treatment plan will prevent Liam from going through the deterioration of joints like my brothers.”
One thing that has never changed is Heather and her family’s connection to camp:
“Our favorite event is the Family Camp at Camp Holiday Trails. We love the community support and it is a wealth of information on what’s new in the Hemophilia world. I love meeting families that are dealing with the same things I am and exchanging tips and shortcuts. My son Liam loves to meet kids his age that “have hemophilia just like me”. The Virginia Hemophilia Foundation has helped my family is so many ways with support, education and a great environment.”
Though treatment plans for bleeding disorders have changed drastically through the years, the need for connection to community and education has not.
Will you make a donation this month for #bleedingdisordersawareness? We have a big goal to meet: $5,000. These funds will help send community members to camp—and so much more.
We have $4,690 left to reach our goal, and you can be a part of this story! Please consider making a gift today.