Rev. Mark Mast, pastor at New Paltz Reformed Church, and Kyle Mast, an eighth-grader at New Paltz Middle School, completed the Nationwide Children’s Hospital Columbus Marathon in Columbus, Ohio on Sunday, October 18. And while there may have been other father-son duos completing the 26.2 miles together that day, this wasn’t your typical situation. The father and son that made up “Team Mito-Mast” made a unique pairing in that Mark ran the marathon while pushing Kyle in a racing wheelchair.
Kyle, 13, was diagnosed just months after his birth with mitochondria myopathy; specifically cytochrome C oxidase deficiency, complex IV. Kyle’s sister, Courtney, now 18, was the first in the family to be diagnosed with the rare disease. It skipped the Mast’s middle child, Alyssa, 16.
Doing the run together was Kyle’s idea, says Mark. “I ran my first marathon last year to raise money for another organization, and he saw someone pushing their son in that race. He said, ‘Dad, that would be a lot of fun for us to do together,’ and that’s how it all got started.”
The two trained together in preparation for weeks. Mark says it wasn’t about setting a record time, but finishing the race. As it happened, they crossed the finish line in just under five and a half hours, not that far off the average finishing time of four hours, 20 minutes.
While Mark says he’s “not much of a runner” and he knew it would be harder to complete the course while pushing Kyle, his mindset from the start has been to think about how his son deals with much more difficulty every day. “It’s been a very emotional experience,” he says. “But this kid has gone through a lot in life, so my 26 miles doesn’t really compare.”
Running in Columbus was inspired partly by a hometown connection — the pastor grew up in Columbus, Ohio — and the marathon has raised more than $3 million for children’s healthcare since it began in 2012. But Team Mito-Mast was there for a very specific purpose: to raise funds for and awareness of mitochondrial disease.
The family has kept a low profile up to now in terms of talking about the disease. “This is the first time we’ve gone beyond family and Facebook,” Mark says. “But we just want to get the info out there. We’ve only been in this community for a year, and we know that this community supports their young people a lot. Kyle said this is something he wanted to do, so we said, ‘Let’s do it.'”
There’s no cure for mitochondrial disease. “We deal with treating symptoms,” says Mark. A person with mitochondrial myopathy fatigues easily, has a weakened immune system and experiences difficulties with organ functions. Kyle has had more than 15 surgeries to correct issues caused by his disease, including three surgeries to remove a total of 40 kidney stones.
“The mitochondria is what produces energy in the cell, so anything that’s a muscle can be affected by the mitochondria,” explains Mark. His children can walk, but because they tire so easily they both use a wheelchair. There is potential for heart problems with the disease, as well, and it can affect them cognitively. It’s also a regressive disease, so it’s expected to get worse.
“There’s a lot of unknowns that go with it,” Mark says. “Some folks get late-onset mito as an adult and it’s minor, and then there are severe cases where babies with it don’t live past infancy. It’s a whole spectrum. We were told early on that our kids probably wouldn’t make it to their teen years, and now my daughter [Courtney] is getting ready to graduate from high school. So we’re hoping to provide some of that miracle for other families. She’s doing well, she’s going to graduate on time, and right now is planning on going to Ulster Community College next year. She wants to go into social work, and help other kids that are dealing with some of the things she deals with.”
When Alyssa was born, the Masts were told she would be affected, too. “At the beginning, they said ‘they’re all going to have it,’ then we had one who didn’t. They can diagnose it better now. We’ve learned a lot along the way; that’s part of why we’re getting the awareness out.”
And it’s one of those diseases that doesn’t necessarily advertise itself. “If you saw my kids for a little while, you wouldn’t realize they have disabilities, but if you spent a day with them, you would see it,” Mark says. “Disability can look very different from what people usually think of. There are a lot of folks out there that carry around disabilities that might not look the part, but life is a daily conquest for them.”
In addition to raising awareness, Team Mito-Mast set a goal of raising $10,000 to benefit the United Mitochondrial Disease Foundation (UMDF). Fundraising is important, too, says Mast, especially with rare diseases like this, because there’s not a lot of grant money or government support the way there is for the better known diseases. And fundraising, he adds, is the way that research gets done and doctors get educated on treatments.
As of press time, the fundraising site set up by Kyle at www.teammito-mast.weebly.com has raised more than $7,000. The website will be online for donations through the end of the year. Local bakery and café Moxie Cup has also participated in helping raise funds for the cause, holding a day earlier this month where they donated 26.2 percent of their profits (the distance of the marathon, of course) to the effort. The staff even donated their tips for the day.
On the website Kyle designed, he and his sisters each explain the affect mitochondrial disease has had on their family. Courtney writes that she uses pain and uncertainty as conduits to empathize with others who are struggling, and Alyssa has had to deal with feelings of guilt that she escaped the burden her siblings have. “This disease has shaped my perspective greatly, as I understand hardship in a way much different from that of my peers,” she writes. “Every accomplishment made by my siblings is a chance to celebrate with them and every challenge I watch them struggle through breaks my heart.” But it’s not about feeling sorry for them, she says; “They’ve overcome more struggles in their lives than I could ever fathom having to face… my siblings have taught me strength, courage, hope and determination.”
As for Kyle, he says that while he fatigues easily, he doesn’t like to let that stop him from doing what he loves. He enjoys biking, swimming, archery, fishing, kayaking, whittling, nature and music. He is also in a local Boy Scout troop and hopes to become an Eagle Scout. Kyle seeks ways to adapt situations so he can participate in activities, whether that means using a power-assisted wheelchair to conserve energy, finding an easier or shorter version of the same activity or just sitting out when that’s the only alternative.
More information about mitochondrial disease can be found at www.umdf.org.