KTVB 12:59 p.m. MST January 28, 2015
NAMPA — A 7-year-old Nampa boy is overcoming a debilitating disease to take on an inspiring journey as the new MDA State Ambassador. He has some big plans to make a difference in our state.
Jayden Long was diagnosed with mitochondrial myopathy – a form of muscular dystrophy – when he was just three.
It causes him to become easily fatigued, his lungs are weak, and he’s losing some muscle function. But that’s not holding him back.
The second-grader at Centennial Elementary School has been tapped to the be the 2015 state ambassador for the Muscular Dystrophy Association in Idaho. The night he was formally announced as ambassador was a special and emotional night for his family, especially his mom.
“Jayden is a superhero in his own right,” said Shellie Long. “He’s been dealt a horrible deck of cards, and he doesn’t complain and he never asks ‘why me?'”
The MDA means a lot to them.
“When my son was first diagnosed, which is a very hard thing to deal with, they were there for the support, they were there for the education,” said Shellie.
Jayden has an incredible, but busy, year ahead of him.
“His biggest honor is he gets to speak at the state firefighters convention,” said Shellie.
Our firefighters collect donations every year for the MDA by filling the boot, and that helps pay for research and programs like the MDA summer camp for kids. Jayden wanted to give back to those firefighters.
“On Christmas Eve I got the idea of bringing little fruit trays and treats to the firefighters to say thanks,” he said.
Jayden’s mom knows her son’s struggle well. She was also diagnosed with the same form of muscular dystrophy. Tragically, her other son died at just 77 days old from pneumonia, a likely complication of mitochondrial myopathy.
“Jaxon had passed away in his sleep … to say the least it’s the hardest thing you ever go through ever,” said Shellie.
“I barely got to even know him,” said Jayden about his little brother. “He had the same disease as I do.”
You can see why this honor is so important to Jayden and his family. He plans to work hard to spread awareness and raise money for the MDA.