A.J. is a fun loving 11-year-old like most other kids. Unlike other kids though, A.J. hasn’t lived a single year of his life without breaking at least one bone. A.J. has osteogenesis imperfecta, most commonly known as brittle bone disorder.
In the beginning, A.J.’s parents, Arlene and James, were overwhelmed to learn of their son’s rare diagnosis. Their “new normal,” as Arlene refers to it, meant extreme demands were placed on the family’s time and finances. Endless appointments and the overall special needs of their child made keeping a full-time job impossible for Arlene. Adding to the stress was the mobility equipment required which cost thousands of dollars.
Hearing about Easter Seals Ontario through another parent of a child with a physical disability was a life changing moment for the family. They continue to benefit from Easter Seals programs and services, like camp.
When A.J. attended camp for the first time it was an incredible experience. It was the only camp A.J. could attend that fully met his needs.
“It gives him so much confidence, a sense of independence, of feeling normal, like he belongs,” says Arlene.
At camp A.J. loves to fish, swim, canoe and interact with the counsellors. “When you speak to Easter Seals staff and volunteers, you feel the trust, you know they are well trained, that they have a heart for all of these children,” Arlene explains.
For A.J. camp is a transformative experience. He returns home a different person, bragging about everything he’s been able to do.
Easter Seals camp also provides variety that A.J. can’t get on a regular family vacation but it’s even more than that. It’s the one place where he doesn’t have to think about his condition.
“It is set up for kids like me so I can feel normal,” says A.J.
Arlene elaborates, “One year, he broke a bone at camp and he was crying, not from the pain but because it meant he had to go home. He was devastated. He wanted us to drive him back for the dance on the last day.”
Camp for Arlene and James is equally important. “When you literally can’t leave your child in anyone’s care and you worry every day that he might break another bone, to say Easter Seals camp is a “relief” is an understatement,” Arlene reveals.” They take such good care of him and even when he broke that bone, it was handled so professionally.”
The time A.J. spends at camp provides Arlene and James with an opportunity to relax, safe in the knowledge that their son is being taken care of. A.J. has become a sort of camp veteran. This summer he will return to Camp Merrywood for the third time!