Florence teens grant wish of 5-year-old with Spinal Muscular Atrophy

February 7, 2012

Florence teens grant wish of 5-year-old with Spinal Muscular Atrophy

SCNow.com | February 3, 2012 | By Patricia Burkett

FLORENCE- A legacy of giving came full circle in Florence Wednesday, as high school students came together to honor the legacy of a former assistant principal while making one child’s dreams come true.

Members of West Florence High School’s student government began a fundraising campaign on Dec. 1, to collect money to grant the wish of five-year-old Grace Dixon.

Representatives from the Make-A-Wish Foundation asked officials at the school if they would like to help grant the wish of Dixon, who suffers from Spinal Muscular Atrophy.

The condition causes progressive muscle degeneration and weakness.

Grace’s mother, Robin, said she was very surprised when she found out that her child’s wish would be granted through the generosity of other young people.

“It was very heartwarming and amazing,” Robin Dixon said.

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Hockey Hearts Needed: Apply Within

January 3, 2012

Hockey Hearts Needed: Apply Within

Cardiac Cane | January 2, 2012 | By KP Kelly

Jonathan Greeson is a 29 year old goalie with Spinal Muscular Atrophy or SMA. As a child, he fell in love with hockey. It became a sport that despite his disability, he could still play in backyard. Jonathan is the founder of the North Carolina Electric Wheelchair Hockey Association (NCEWHA) and the Carolina Fury PowerHockey™ Team. In March 2009, Jonathan and the Carolina Fury were honored by the Carolina Hurricanes as they were given the privilege of sounding the Hurricane Warning Siren. Jonathan was also named Time Warner Cable’s Skater of the Game.

Carolina Fury is one of many organizations supported by the Canes’ Kids ‘N Community Foundation, but the team needs fan support as well…

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Broken spine, torn pages help fuel teen’s charity

January 3, 2012

Broken spine, torn pages help fuel teen’s charity

The Tampa Tribune | December 31, 2011 | By Ray Reyes

BRANDON, Fla. — He fixes spines, mends tears and restores missing pieces.Ben Carpenter started this work when he was 12 and has refurbished a library’s worth of books during the past four years.He has donated the restored books, about 4,200 in all, to assisted living facilities, schools, homeless shelters and other organizations through his nonprofit company, Ben’s Mends. Carpenter, now 16, said his sense of civil service is inspired by two things: his parents and a congenital condition, spinal muscular atrophy, which causes muscle degeneration and weakness.The medical care that has helped him lead a productive life drives him to give to others, he said. Carpenter is a volunteer for Junior Achievement, Shriners Hospitals and other groups but wanted a charity to call his own.

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BOONE LIFE: MU art student with disability expresses self in art

December 29, 2011

BOONE LIFE: MU art student with disability expresses self in art

Missourian | December 26, 2011 | By Pinar Istek

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COLUMBIA — Her days take more planning than those of most people. She needs to see one of her five caregivers three times a day. She spends her nights in a chair instead of a bed. Other than that, Allison Reinhart, 26, is not much different than any other person.

“I just don’t want people to look at me and my story and how I get around and think that’s the way that those people do that stuff,” said Reinhart, an art student at MU.

She was diagnosed with spinal muscular atrophy, a hereditary neuromuscular disease, when she was 16 months old. Reinhart lived in the suburbs of St. Louis until moving to Columbia two years ago.

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‘Happiness is always an option’

December 29, 2011

‘Happiness is always an option’

The Morning Call | December 24, 2011 | By Milton D. Carrero

The early morning looks dark from his room at his parents’ Bethlehem home, but Shane Burcaw’s mind is alert and on the go.

The dim beam from his MacBook Pro monitor bounces on his thumbs, casting a shadow on his curved hands as they pace their way through the illuminated keyboard. Burcaw, a blogging sensation who in six months has garnered tens of thousands of followers, rummages his most heartfelt memories with only one goal: to make you laugh.

A 19-year-old journalism sophomore at Moravian College, Burcaw will write almost anything if he feels it’s funny. He wants to be honest with himself and with his audience, which grows at baffling speeds.

“My main objective is to make other people laugh,” he says. “That’s probably my favorite thing in life.”

He comes from a family of writers and people with an unrestrained sense of humor. Burcaw grew up used to having others laugh either with him or at him, he didn’t mind.

“Whenever I am out in public it is pretty much a guarantee that at least a few people will make it completely obvious that they have never seen someone like me before,” he writes. “By ‘someone like me,’ I mean an alien-like pterodactyl creature with a human head that uses a wheelchair.”

He suffers from spinal muscular atrophy, type 2, one of the 43 neuromuscular diseases beneath the muscular dystrophy umbrella. His body lacks one of the proteins used to develop and maintain muscle. Or as he puts it: “My body made some muscle when I was young and then just stopped. And then it kind of sucks at maintaining the muscle.”

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Fulton man’s memoir demonstrates the power of a fighting spirit

December 22, 2011

Fulton man’s memoir demonstrates the power of a fighting spirit

Syracuse.com | December 19, 2011 | By Sara Tracey

Craig Abbott’s autobiography begins at what could have been the end: He was dying.

At 18, one of his hundreds of cases of pneumonia turned into something worse. An ambulance was called when Abbott had difficulty breathing, made more difficult by his spinal muscular atrophy type 1, a disease that can weaken the muscles used for breathing and coughing.

On the drive to the hospital, the cough assist machine in the ambulance that would clear his lungs to improve his breathing wasn’t working. He passed out while the ambulance staff used a manual respirator to breathe for him. He came back to consciousness 13 hours later, hooked up to another breathing machine.

Abbott, now 23, of Fulton, said he opened his book “Classified Terminally Ill: A Young Man’s Story of Beating the Odds,” with this incident because of his fighting spirit. It’s a resilience that friends say Abbott has possessed his whole life.

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Playground for Physically Disabled Children Scheduled for Summer Completion

December 9, 2011

Playground for Physically Disabled Children Scheduled for Summer Completion

Woodbury Patch | December 9, 2011 | By Zac Farber

Before Madison Claire Millington died at the age of 2 in 2004, her mother, Dana, was frustrated by Madison’s inability to enjoy any of Woodbury’s playgrounds.

Madison was born with spinal muscular atrophy—a genetic disease that destroys the nerve cells controlling voluntary muscle movement—and she was restricted to a stroller.

“We couldn’t take Madison and our other two children together to go to any of the playgrounds in Woodbury,” Dana Millington said, “because she was stuck in a special stroller and I wasn’t able to get her access to the structure.”

Shortly after Madison’s death, Dana heard about a California organization, Shane’s Inspiration, founded by parents who had lost their son to spinal muscular atrophy. The organization raised money to build playgrounds where children with physical and developmental disabilities could play alongside their “typically able” peers.

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