One Family’s New Normal [Video]

April 19, 2012

One Family’s New Normal [Video]

Columbus Parent | By Jane Hawes

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It’s called Spinal Muscular Atrophy Type 1 and it has become the “new normal” for the Kingsley family.

Scott and Allison Kingsley’s youngest son Brett was diagnosed with SMA-1, a disease that affects voluntary muscle movement, when he was 7 months old. He just turned 6 in March and continues to beat the odds, thanks to a family-based system of care and what his mother calls their “circle of hope.”

It’s a circle that starts with Brett or “Prince Brett,” as Nationwide Children’s Hospital social worker Lori McCullough and other staff members there have dubbed him. He’s a blond-haired boy with dark eyes that move constantly, taking in everything around him, and elegantly long fingers that dance across the controls of the DynaVox, a speech-generating device, that talks for him.

The next ring of the circle is populated by his immediate family. Allison is the mom. You could call her a homemaker, but to do so you’d have to expand your definition of “home” to include most of the 614 area code. When she isn’t overseeing much of Brett’s therapies, doctors’ visits and all three of her children’s schooling in the Hilliard district, she’s giving speeches to new employees at Nationwide Children’s Hospital as part of their Family Advisory Council’s “Family as Faculty” program. And, of course, she’s also getting everyone else in the family fed, clothed and off to school, work or church each day.

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Ms. Wheelchair Massachusetts encourages others to pursue their dreams

April 15, 2012

Ms. Wheelchair Massachusetts encourages others to pursue their dreams

Community Advocate | April 13, 2012 | By Sue Wamboldt

Marlborough – Most Sunday mornings Patti Panzarino can be found attending church service at Greater Grace Christian Fellowship in Marlborough, 187 Pleasant St. Outside of the sanctuary, she is not only a founding member of the band, OLYPSYS, but she has recently been crowned Ms. Wheelchair Massachusetts.

Panzarino was born with Spinal Muscular Atrophy Type 2 (SMA 2), a genetic disease in which loss of nerve cells in the spinal cord affects the part of the nervous system that controls voluntary muscle movement. Although Panzarino has lived her life in a wheelchair, she has not let her disability get in the way of her dreams.

Panzarino brought her message of empowerment to the Ms. Wheelchair Competition March 3. Her platform of “Creative Perseverance,” born out of life experiences, inspired the judges to crown her Ms. Wheelchair Massachusetts 2012 at the Massachusetts Hospital School in Canton. The mission of the Ms. Wheelchair America Program, and the individual state programs, is to “provide an opportunity for women of achievement who utilize wheelchairs to successfully educate and advocate for individuals with disabilities,” according to the organization’s website http://www.mswheelchairmass.org.

“The platform for my year as Ms. Wheelchair Massachusetts is ‘Creative Perseverance.’ This has actually been the theme of my whole life,” Panzarino said. “I learned to self-advocate from my older sister who mentored me at a very young age. The more that people with disabilities push through obstacles and participate in life, the more people will see us and our acceptance and encouragement to participate increases. It becomes an upward spiral.”

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Disabled but determined: Winton filmmaker has Hollywood dreams

April 15, 2012

Disabled but determined: Winton filmmaker has Hollywood dreams

Merced Sun-Star | April 13, 2012 | By Doane Yawger

WINTON — Don’t tell Aaron Schindler something is impossible. That will make him even more determined to make it happen.

The 31-year-old Winton resident has muscular dystrophy and spinal muscular atrophy, which make him wheelchair-bound and severely limit his mobility. Despite these setbacks, he intends to produce a full-length animated feature film that could hit movie screens in about three years.

“The quote I live by is, ‘Nothing is impossible,’ ” he said. “If you take the impossible and break it into little tasks, the impossible becomes possible. I’m a pretty easygoing person and let stuff roll off my shoulders and don’t let anything bug me too much.”

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Mom Hopes To Build Playground In Daughter’s Memory

February 8, 2012

Mom Hopes To Build Playground In Daughter’s Memory

CBS Minnesota | February 8, 2012

Raising a big amount of money hasn’t come easy for one Woodbury mom who’s trying to do something special in honor of the daughter she lost.

Madison Claire Millington died August 2004 when she was only 2 years old. When she was diagnosed with Spinal Muscular Atrophy, her mom, Dana Millington, was told that Madison Claire only had one year to live.

Almost eight years later, Millington calls her youngest daughter Emerson a miracle. Emerson had a one in four chance of inheriting the same deadly muscular disease that took her sister, Madison Claire.

To ensure that Emerson wasn’t born with Spinal Muscular Atrophy, Millington and her husband used In Vitro Fertilization and a process which tests the eggs for genetic abnormalities before they’re fertilized.

The time spent with Emerson is special considering the difficulties of parenting a child with SMA.

“(Madison) had her special stroller. We had oxygen tanks we had to take with,” said Millington. “Even going to the park, we couldn’t go through the sand and rocks for me to also be with my other two children.”

It was that specific challenge that compelled Millington to help others. After Madison died, she made it a priority to raise enough money for a playground that every kid could use, in honor of her daughter.

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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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