Run for a courageous local boy

August 12, 2015

By Nicole Sands, Marshfield Mariner

In many ways, Thomas Schmid of Marshfield is just like any other 9-year-old boy. He’s a Cub Scout. He’s excited about starting fourth grade. He takes golf lessons, and has a particular fondness for mini golf. And, of course, he loves playing video games.

But Thomas also faces a difficult challenge.

In 2012, he was diagnosed with mitochondrial disease, a chronic illness that causes debilitating physical, developmental, and cognitive disabilities. Symptoms include poor growth, loss of muscle coordination, muscle weakness and pain, seizures, vision and hearing loss, gastrointestinal issues, learning disabilities, and heart, liver or kidney failure.

There is no cure.

Mitochondrial disease can be present at birth or develop later in life. According to Abby and Adam Schmid, their son started showing notable symptoms around the age of 4.

“Thomas complained of leg pain with activity,” Abby said. “He would get short of breath easily and have difficulty climbing stairs and running. He had generalized weakness and it continued to get worse with no explanation.”

They brought Thomas to Children’s Hospital in Boston.

“That’s when we were given Thomas’ grim prognosis. We were told it could be two months, two years or 20 years,” she said. “We were advised to give him supplements and just hope for the best.”

The Schmids decided to treat Thomas with an integrative approach combining conventional and homeopathic methods. Thomas is responding better than expected. Although he cannot keep up physically with his friends, he is still thriving.

“We focus on the positive,” Abby said. “That is our only option. We just believe.”

Since his diagnosis, Thomas has received incredible support from his family and friends.

Thomas is also part of “Team IMPACT,” a program that helps children who are unable to participate in team sports due to disabilities and other health conditions. The program matches these children with college athletic teams. Thomas was matched with Mass Maritime Men’s Soccer Team.

“The Mass Maritime soccer team has been amazing,” Abby said. “Thomas was drafted and signed. He has a locker and a game jersey. He is included in team events. These guys have spent time with our entire family. They take Thomas out for dinner and to play mini golf. They mean so much to us.”

This September, Thomas’ teammates will once again join his family and friends to raise awareness about mitochondrial disease at the MitoAction Energy Walk & 5K in Boston.

“Last year, Thomas was pushed in the running stroller for most of the race,” Abby said. “And then, about 40 yards from the finish line, he jumped out. With all his energy and endurance, Thomas crossed the finish line with everyone cheering him on. It was amazing.”

“The event had a big impact on Thomas,” she said. “He knows there are many friends and family that care and support our efforts to keep him at his optimal level of health, but he’s never seen them together at the same time. This was that opportunity. And we capitalized on it by doing with him what he is not supposed to be able to do—run.”

Thomas’ Team had at least 30 members last year, including his siblings Joey, 7, Penny, 4, and Rusty, 3, as well as the soccer team. Thomas’ father Adam, a Mass Maritime graduate, was deployed at the time, but will be there this year.

“We are putting together another super team to help Thomas ‘run’ again,” Abby said. “And we are always looking for more team members!”

Proceeds from the event benefit MitoAction, a Boston-based nonprofit organization dedicated to improving the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, and clinical research initiatives.

The MitoAction Energy Walk & 5K will be held on Saturday, Sept. 12 at DCR’s Mother’s Rest in South Boston. This family-friendly event, designed to raise awareness about mitochondrial disease, features a walk, a scenic 5K, and a day of fun for all ages and abilities. For more information and to register or donate, visit www.mitoaction.org/walk.

This team has big impact on Marshfield boy

(Release courtesy of MitoAction)

BOSTON – When Thomas Schmid crossed the finish line at last year’s MitoAction 5K, he had a whole team behind him.

“My best memory of last year is all of his teammates from Massachusetts Maritime Academy men's soccer team along with his friend and neighbor going out to meet him as he approached the finish line and cheering him on as they ran beside him,” said Thomas’ mom, Abby.

It’s that support that is the hallmark of the MitoAction Energy Walk & 5K, which will be held Saturday, Sept. 12, 2015, at DCR’s Mother’s Rest in South Boston, MA. This family-friendly event, designed to raise awareness about mitochondrial disease, features a walk, a scenic 5K, and a day of fun for all ages and abilities. While the walk is in Boston, MA, MitoAction has walkers and runners all over the country. For more information and to register as a walker, runner, or virtual walker or runner, visit www.mitoaction.org/walk.

Thomas, who will be 9 on Aug. 10, has mitochondrial disease. He ran the last 40 yards of the 5K after being pushed by neighbor and friend Dave Kennedy. Thomas’ dad, Adam, was deployed at the time and missed the event, but he will be in attendance this year!

“My focus last year was on making sure Thomas had a team to get him over the finish line,” said the Marshfield, MA, mom. “This team is visible for him. He knows there are many friends and family that care and support all our efforts to keep him at his optimal level of health daily, but he never has seen them together in the same place at the same time. This was that opportunity and we capitalized on it by doing with him what he is not supposed to be able to do -- run.”

“Mito” is an inherited chronic illness that can be present at birth or develop later in life. It causes debilitating physical, developmental, and cognitive disabilities with symptoms including poor growth; loss of muscle coordination; muscle weakness and pain; seizures; vision and/or hearing loss; gastrointestinal issues; learning disabilities; and heart, liver, or kidney failure. About 1 in 4,000 people has Mito. It’s progressive and there is no cure.

Thomas’ Team had at least 30 members last year, including his siblings Joey, 7, Penny, 4, and Rusty, 3, and the Maritime soccer team. Thomas is part of Team IMPACT, which matches kids who can’t play sports because of their disabilities with local teams. The soccer team has been super supportive of Thomas and his family and will be at this year’s walk.

“Our goal this year is to have as many team members, if not more than last year, while being able to support MitoAction and give back to them for all they do for all of us,” said Abby.

“MitoAction has helped us find the resources we needed at a critical time; their webpage alone has been a huge reference on a regular basis; and we know they are there if we need them because MitoAction is so much more than an organization, but actual people,” said Abby. “We are very grateful for that!”

Proceeds from the walk/5K benefit MitoAction, a Boston-based nonprofit organization dedicated to improving the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, and clinical research initiatives. Learn more at www.MitoAction.org.

The event is sponsored by Stealth BioTherapeutics, Courtagen Life Sciences, Inc., America’s
Compounding Center, Reata, Acton Pharmacy, MitoXCell, In the Pink, and Deep River Snacks.

For more information, email walk@mitoaction.org or call 888-648-6228. To register, visit
www.mitoaction.org/walk.

TWEET IT: Join @MitoAction and raise awareness about mitochondrial disease at the
#MitoEnergyWalk on Sept. 12.