When three-year-old Jake Burgman was born, something was wrong.
Three months into his life, the Burgman’s noticed that Jake was unable to lift his own head, among other developmental delays. What followed were three painful years of uncertainty, trying to nail down the mystery behind Jake’s condition.
Finally they were given a sense of closure when he was diagnosed with Pelizaeus-Merzbacher Disease (PMD) and the Burgman’s were able to assess the situation and figure out how to treat it. PMD is a highly rare central nervous system disorder where coordination, motor abilities and intellectual function are extensively delayed. To learn more, click here.
According to Pass Herald, Jake’s mother Sue said,
“He had no idea that he had a pelvis. He wasn’t using it. He was army crawling, just dragging himself with his forearms across the floor. He had a hard time rolling, he wasn’t sitting and he had no sign language, so there was no way of communication.”
As helpful as this therapy was for Jake, it does not qualify for coverage under healthcare plans and without the insurance, it’s incredibly expensive.
The Burgman’s decided to throw a party.
“That’s going to be the journey, to try to help other families that are in the same situation as me where they’re just frustrated with what the medical system provides and not knowing where to go.”