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Braintree Family Searches for Spinal Muscular Atrophy Cure

The Norton family will participate in the 13th Annual Families of Spinal Muscular Atrophy New England Chapter Cure SMA Walk-n-Roll. Saturday's walk will be the first since Kathy Norton passed away.

On a sunny afternoon, it's common to find 10-year-old Owen Norton playing baseball in the backyard of his Braintree home. Owen can't swing a bat, but he still uses his wheelchair to take him around the bases.

Owen has Spinal Muscular Atrophy (SMA), group of inherited motor nerve diseases that cause muscle weakness and atrophy, giving him only limited use of his hands and arms.

This Saturday, May 18, Owen's immediate family, father Don, and his siblings,  Kerrin, 16, Caitlin, 14, and Ryan, 9, along with his large extended family and friends will participate in the 13th Annual Families of SMA New England Chapter Cure SMA Walk-n-Roll. The charity walk, which raised more than $110,000 in 2012, will be held on a 1.5-mile path at DCR Wompatuck State Park in Hingham.

The family has been planning and participating in the event since 2004. This will be the first FSMA walk since Kathy Norton, Owen's mother, passed away, just three months ago.

"This was a big event for Kathy," said Don Norton.

Kathy will be remembered with her initials on the event shirts and by many of the participants, including colleagues from the Boston Globe where she worked and Don is still employed.

Silvia and Brian Murphy started the walk in 2001, after losing two infants to SMA. The Nortons and the Farrell family of Quincy got involved three years later after their children were diagnosed. 

"It's a natural inclination to get involved to find a cure," said Norton.

As a baby, Owen wasn't hitting age-appropriate milestones, like walking. At first, doctors thought he may just have weak muscle tone, a problem that can be fixed with physical therapy. Eventually, a muscle biopsy and a trip to Boston Children's Hospital led to an SMA diagnosis.

"It was kind of a long ordeal to figure out what was going on," said Norton.

Now, Owen is in school with his sharp wit and happy demeanor. Along with playing baseball, Owen has the same interests as most of his peers.

"He likes school, he likes the Bruins, he likes the Red Sox," Norton said of his son, who will attend East Middle School next fall.

Owen has help at school and home. At school, he's assisted by Kate Roedel and at home his aide is Rachel Leonard. 

"Those two aides have been fantastic," said Norton.

The Norton family, which includes Don's six siblings, four of which live in Braintree, are working toward a $125,000 goal at this year's walk. Don's other children are also involved in the fundraising.

"They're great examples of love," said Norton.

But it's not just family that have united around them, Norton lauded the people of Braintree for helping and supporting his family.

"We've been fortunate to come to know so many amazing people," said Norton.

To learn more or to donate to the 13th Annual New England Chapter Cure SMA Walk-n-Roll visit FMSA.org. Saturday's rain or shine event will be held from 9 a.m. to 12 p.m. at Wompatuck State Park, 204 Union Street, Hingham.

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