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Beverly Beckham

A mother perseveres for her son

Jett McSherry of Pembroke threw out the first pitch at Fenway before a Red Sox game last year. Jett McSherry of Pembroke threw out the first pitch at Fenway before a Red Sox game last year.
Email|Print| Text size + By Beverly Beckham
December 30, 2007

I met her on a summer day five years ago. It was August and her kids were swimming, three boys and two girls, all of them 14 months apart.

Beautiful kids. A beautiful home. A good marriage. A good life.

She was a nurse who decided to stay home to raise her children and who was very aware of how lucky she was to have this choice. She counted her blessings. She counted herself blessed.

Until her middle child, Jett, at age 5, was diagnosed with Duchenne muscular dystrophy. A progressive and fatal muscle disease that affects primarily boys, DMD slowly paralyzes a child and there is no treatment or cure. "There's nothing you can do," a neurologist told Christine McSherry and her husband, Stephen, on Feb. 16, 2001. "He will be dead in five years."

It was a day that changed their world.

The McSherrys went home and cried.

It takes faith and hope and determination and incredible stamina to shake off a doctor's death sentence. But that's what the McSherrys did. For one weekend, they locked their doors and shut out the world, and the family huddled together and prayed and pondered what to do next. And then they opened the doors and came out with a plan.

Christine would learn everything she could about Duchenne muscular dystrophy, find alternative treatments, raise funds for research, educate people, and dedicate her life to saving her son and other children with this disease.

When I met her, she was 18 months into being an advocate, educator, and fund-raiser. And Jett was growing stronger, not weaker. He was seeing a nutritionist and an acupuncturist. He was jumping off a diving board. And running. And climbing the ladder in the pool. And the Jett Foundation, which she began, had made its first donation of $50,000, raised one day at a time, dollar by dollar, to a researcher.

Initially, money raised for the foundation came from yard sales. Neighbors and friends sold their things and donated what they made. Local stores put out canisters and people filled them with dollars. Then the McSherrys had a fund-raiser in their Pembroke backyard and more than 500 people showed up - friends, neighbors, even strangers. They raised $35,000 that day. The local community has always supported the McSherrys. But now the community is the world.

The Jett Foundation, approaching its eighth year, has not only raised $1.7 million through yard sales, golf tournaments, road races, and a nine-week cross-country bike ride last summer. (Jett's 14-year-old sister rode.) It has also educated thousands of people along the bike route, and piqued the interest of award-winning filmmaker Wayne Keeley, whose documentary about the ride is due out in the spring.

The Jett Foundation is also one reason Dr. Brian Tseng, a pioneer in DMD treatment, decided to come to Massachusetts General Hospital. Because the foundation shares his dream of opening a neuromuscular clinic dedicated to the care and cure of boys with DMD. And there is no such clinic as yet in the Northeast.

Jett is 12 now. He's in sixth grade. Included in a letter the foundation sent out last week is a poem he wrote:

My Dream

Pilot

Fast, Skillful

Speeding, Turning, Twisting

Clouds, Sun, Sky, Moon

Zooming, Soaring, Gliding

Excited, Sunny

Freedom at last . . .

He can't ride a bike anymore. Or climb the stairs to the pool. Or walk very far. Or do a lot of things most 12-year-olds do without even thinking. The disease is progressing.

But like his mother, he dreams. And he hopes. For some new treatment. For some more time. For a cure. For more people to care that this is a disease with little funding that affects approximately 20,000 children a year worldwide - one in every 3,500 boys.

That may seem like not so many. But every one is a child. And every one is someone's child.

Jett has outlived his neurologist's prognosis. His mother is the reason. Sometimes you wonder, Can one person really make a difference?

Christine McSherry makes a difference not just in her son's life but also in the community of boys with DMD. And every person who gives - neighbors, strangers, corporations - can make a difference, too.

For more information, contact The Jett Foundation, 26 Columbia Road, Pembroke, MA 02359 or visit jettfoundation.org.

Beverly Beckham can be reached at bevbeckham@aol.com. Listen to Beverly read and talk about her columns in her weekly podcast at boston.com/news/podcasts.

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