GRAND RAPIDS, Mich. (WOOD) — At 15 years old, Ben Boelens knows a lot about Hemophilia A and knows it doesn’t have to hold him back.
In March, he went to Washington D.C. to advocate for hemophiliacs and others with bleeding disorders.
Diagnosed at birth and with hemophilia in the family, Boelens and his parents know what they must do to keep him safe.
“Thankfully, because of this clotting factor that I get I’m able to do, a lot of the stuff that everyone else is (doing),” he said. “It’s just main things where I can’t play really high-contact sports like football or boxing or wrestle but beyond that I can life a perfectly normal life.”
Internal bleeding is the biggest concern. Over time, that can lead to joint damage robbing those with hemophilia of their ability to walk.
“Even though he looks completely healthy, he is very healthy and takes excellent care of himself, and his parents have done an excellent job of giving him his (clotting) factor and taking care of him, he’s (still) at risk for trauma to cause life-threatening bleeding,” said Dr. Deanna Mitchell, the medical director of the Coagulation Disorders Program at Helen DeVos Children’s Hospital.
At Camp Bold Eagle in Muskegon County, kids with bleeding disorders are treated to not only campfires, archery and arts and crafts, they are able to see how others are living with their bleeding disorder.
“It’s really important because there I don’t feel like I’m special or different in anyway. I’m just surrounded by people who have the same problem so we all just act like normal people,” Boelens said. “No one has to worry about I have a bleeding disorder because everyone does.”
Dr. Mitchell says gene therapy has shown big promise. Trials are proving some with severe cases can sustain normal levels of clotting for more than a year.
“Hopefully by the time he has grandsons, we’ll have gene therapy right away for them,” said Mitchell.
The Hemophilia Foundation of Michigan’s Butterfly Benefit to fund Camp Bold Eagle is happening Thursday night at the Grand Rapids Art Museum.
The benefit raises money with a goal that each camper will only have to pay $25 to attend camp this summer.