The Gansevoort teen was one of 350 advocates who were invited as ambassadors of the Arthritis Foundation to speak at their 15th annual Advocacy Summit held in Washington D.C. on Capitol Hill March 4-6. His mission was to share the story of his daily battles with arthritis and to urge politicians to support funding for more pediatric rheumatologists throughout the country.
“We met with congressmen and the representative’s staff members along with other members of the Arthritis Foundation,” said Michael. “We didn’t so much have it planned what I would say. I just told my story about what happened and how far I had to travel to get to a doctor.”
Six years ago, Michael suffered a foot injury that was not healing properly. His parents weren’t sure what to make of it as Michael continued to feel pain that doctors struggled to diagnose. Frustration with the disease continued to mount.
“At first my feet just kind of started to hurt and I didn’t know why. I had broken a couple of toes a few months earlier and they just never healed,” recalled Michael. “At first they thought I was just messing around but as time went on they started to see I was being serious.”
“He had injured his foot and it never got better,” said his mother, Jody Higgins. “We had him tested for a lot of different issues. We weren’t exactly sure what was going on. He was also diagnosed with juvenile diabetes as well, which is what the doctors believed was why he wasn’t healing. After we had that under control, he still wasn’t getting any better and both his feet were very swollen. That’s when we went to Fletcher Allen Children’s Hospital in Vermont.”
Michael’s parents would turn to a doctor located roughly three hours north of their home in Burlington, Vermont. The family chose Vermont because despite other in-state medical providers, Burlington was technically the closest.
“Even though New York is blessed with many pediatric rheumatologists, most of them are towards New York City. There’s actually quite a few down there. You have to pick the closest option, which was the one that’s in Burlington. She’s actually the only one in the entire state of Vermont,” said Jody.
While three hours to the closest doctor might seem like a lot of driving, the Higgins family considered themselves lucky to have the option when you consider the lack of pediatric rheumatologists in other parts of the country. When he traveled to Washington, he hoped to raise awareness of just how significant the lack of proper care was for other children dealing with the same issues day in and day out.
“I would say there definitely has to be a lot more of them because there really aren’t that many pediatric rheumatologists. When people think of arthritis, they think it’s a disease that only the elderly get but there are a lot of kids across the country with it that there is no help for. In fact, in some Midwestern states, there are no doctors at all. They have to travel hours upon hours every couple of months just to be seen.”
After years of treatment, Michael lives as close to a normal life as possible. He remains very active, playing basketball, football and running track. His mother’s outlook is realistic yet hopeful.
“He needs to remain active for the rest of his life because that helps. They always say ‘A body that’s in motion will stay in motion,’ and that’s really true for people who suffer from arthritis,” said Jody. “He can have flare ups. There’s been times he’s been in a wheelchair. Frequently he’ll have to use crutches. It knocks you down for a while when there is a flare up but in Michael’s case, he’s doing really well now.”