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While Bodhi Bhattarai climbs mountains in Concord, a family friend is doing the same in Tanzania – on Mt. Kilimanjaro 

  • Bodhi Bhattarai visits the State House to get his copy of the 2016 SMA Awareness Month Gubernatorial Proclamation. Courtesy

  • Courtesy—

  • Mike Degagne poses for a photo on Mount Toubkal in Morocco. He’s climbing Mount Kilimanjaro to raise money for a cure for spinal muscular atrophy. Courtesy

  • Courtesy—



Monitor columnist
Sunday, August 28, 2016

Something happened to Mike DeGagne about a year ago, something that moved him to climb a mountain.

Earlier, he’d met his close friends’ healthy baby, Bodhi Bhattarai. Soon, though, DeGagne heard that Bodhi, now 2, had a rare genetic disease, leaving the little boy’s future in doubt.

“He was a completely normal child, and one day he woke up and there was a major problem,” DeGagne said by phone. “Seeing him before that period of time made it devastating.”

That’s why DeGagne, a native of Chelmsford, Mass., who now lives in New York City, is in Tanzania, where, as you’re reading this, he’s climbing Mount Kilimanjaro, the fourth highest mountain in the world and the tallest in Africa.

He’s raising money to help find a cure for SMA, or spinal muscular atrophy, which affects about one in 10,000 babies, yet stands as the No. 1 genetic killer of infants.

He’s hoping – as are Bodhi’s parents, Ranjan and Deodonne Bhattarai of Concord – that you’ll read this column and donate. He’s hoping current research will continue to progress, creating a cure so Bodhi can leave behind those contraptions with straps and wheels and move on his own.

DeGagne spoke to me from NYC last week, just minutes before leaving for the airport. He left this weekend and hopes to conquer this giant, nearly 20,000 feet of slate and loose rock, by next weekend. Ranjan and Deodonne hope the medical community can  conquer this evil giant that afflicts their son, and soon.

The family walked in a 5-kilometer event Saturday in Wakefield, Mass., to increase funding and awareness for SMA. I visited them at their home afterward, plus other family members from New Jersey and South Boston, all of whom had participated to help the little boy with the smile that told you he didn’t have a care in the world.

Deodonne is an attorney who put her career on hold last summer “in order to manage Bodhi’s ever increasing healthcare needs.” She now volunteers at a local nonprofit that specializes in disability rights.

She told me she knows of someone living with SMA who might be as old as 40. But she also told me she met parents at the Wakefield walk whose child died from it at 18 months old.

“The hope is he’ll walk one day without assistance,” said Ranjan, a cyber security architect in Boston. “That’s the real goal.”

So DeGagne climbed aboard, and chose to climb a mountain. He’s a friend of Ranjans’s from their school days. He visited Ranjan’s family in Nepal and said his parents treated him like family.

He’s been part adventurer, part traveler, part mainstream business guy all his life, telling me by phone, “ “I always wanted to travel and as a kid all I wanted to do was travel and carry a briefcase case and wear a suit and tie.”

He wears short and jeans at his job in Manhattan, which is fine with him. He’s traveled to 36 countries, including Tanzania, mostly on work-related trips.

He climbed Mount Toubkal in Morocco last year, his first climb of more than 14,000 feet.

This one, though, is different.

 

This one is for Bodhi.

“When I head the news about their son it really affected me,” DeGagne said. “You never think things are going to happen to your or your friends, and when they do you feel completely helpless. There’s nothing I can do, no cure for this, it really hits you hard. Everyday is a struggle.”

Not at first. Bodhi seemed fine through the early months of his life, which is when DeGagne visited. He saw a baby ready, willing and able to move.

That changed when Bodhi was nine months old. He stopped rolling over and sitting up. He was diagnosed with SMA, a hereditary disease that destroys lower motor neurons, the nerve cells in the brain stem and spinal cord that control voluntary muscle activity. Recent research has been promising, leading to medical breakthroughs and clinical trials for Bodhi. FDA approval on a particular drug could come within a year.

Meanwhile, Bodhi used a litte wheelchair, a stander and a gait trainer, all of which take pressure off his muscles and bones, provide some independence and give the family a vision they hope is a reflection of years to come.

 

DeGagne raised $1,000 in sponsorship for his climb and matched that total himself. He spent $3,000 for the hike and $2,000 for air fare. He joined a group that will be led by professional guides.

He’s dealing with zero degree temperatures at night and potential altitude sickness during the day. 

“I’m standing over a bunch of socks and underwear and I’m leaving in a few minutes,” DeGagne said. “I just have to throw it all in my bag and it’s off to the races.”

Added Ranjan, “For Mike to contribute like this was a case of him asking, ‘How can I be part of this.’ I personally think it’s amazing for him to put his name out there. He just wants to be part of our lives.”