Max's Moment: North Charleston boy battling deadly disease, named firefighter for a day

North Charleston boy battling deadly disease, named firefighter for a day

NORTH CHARLESTON (WCSC) - Max High is a fighter.

For most of his life, the North Charleston boy has been battling Spinal Muscular Atrophy, or SMA, a disease that severely weakens the muscles, taking away the ability to walk, eat or breathe.

At 17 months, mom, Traci High, says doctors offered a 50 percent chance Max would live to see two years old.

Max is now seven.

"All the function he has is just a little bit of hand movement," she said.

"A lot of times he doesn't get to experience things like typical children would because of the constraints of his (wheel)chair and the accessibility features."

After meeting the High family, North Charleston City Council Ron Brinson wanted to change that.  The family, who is also dealing with the military deployment of their father and husband, also has one other member diagnosed with the disease.

Their 2-year-old son Alex.

"What we have is a neighborhood that's rallied around this family," Brinson said.  "Max is an inspiration to everyone."

Saturday, a boy fighting a potentially deadly disease, lived out one of his biggest dreams.

Councilman Brinson put in a call to North Charleston Fire Chief Greg Bulanow, who quickly agreed to name young Max, firefighter for a day.

One of the city's newest trucks arrived at his front door, complete with a team of firefighters ready to teach, talk, and play.

Max rose to new heights on the truck's aerial ladder, also lapping the North Charleston neighborhood twice, with a huge smile, and front row seat.

"It made me feel awesome," Max said.

"We have some hard days in our house, " added mom Traci.  "So on a day like today, in a sense makes up for those days."

There are no approved treatments for SMA, but the family is hopeful for future clinical trials.

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