September’s legacy: Taking on Harvard in a wheelchair

August 27, 2012

CNN | August 27, 2012 | By Ben Mattlin

For many, back-to-school is a season of anticipation, nostalgia, and shopping. For me, it evokes memories of an unsung historical event: the integration of Harvard.

No, I’m not talking about racial integration; I’m talking about the full inclusion of students with disabilities.

When I entered Harvard College as a freshman in 1980, it happened to coincide with a new requirement — all institutions receiving federal funds had to become fully accessible under Section 504 of the Rehabilitation Act of 1973.

I was a 17-year-old lifelong wheelchair-user, born with a neurological condition called spinal muscular atrophy. I’d never walked or stood and my arms were weak as a baby’s. But, as my parents often said, there was nothing wrong with my head.

I had little awareness of the precedent I was setting.

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Maghull six-year-old with strength of newborn baby raising £17,000 to replace broken wheelchair

November 17, 2011

Maghull six-year-old with strength of newborn baby raising £17,000 to replace broken wheelchair

Liverpool Echo | November 17, 2011 | By Liza Williams

A MERSEYSIDE schoolboy with the strength of a newborn baby needs a new wheelchair after the wheels fell off his old one.

Six-year-old Ryan Noble, from Maghull, has spinal muscular atrophy, a degenerative disease.

His family are now trying to raise £17,000 for a specialist chair to help him get about with the help of the Caudwell Children national charity.

The Balder powered wheelchair is not available on the NHS but would transform his life, according to his mum Suzanne.

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Woodham Mortimer aunt braves bungee jump to help ‘amazing’ Nancie

November 5, 2011

Woodham Mortimer aunt braves bungee jump to help ‘amazing’ Nancie

Maldon Chronicle | October 24, 2011

A DARING aunt who is terrified of heights took to the skies at the weekend to raise money for a specialist bathroom for her disabled niece.

Nancie Seaber suffers from a debilitating condition, called spinal muscular atrophy, which means she has no muscle control and is confined to a wheelchair.

But, in a bid to make two-and-a-half-year-old Nancie’s life a little easier, auntie Kellie Jewell did a bungee jump to raise funds for a wet room she can bathe in.

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Insurers put brakes on fast approvals for power wheelchairs

September 27, 2011

Insurers put brakes on fast approvals for power wheelchairs

philly.com | September 27, 2011 | By Stacey Burling

Samantha Lorey, 27, would be a mere 4-foot-5 if she could stand. She weighs just 70 pounds. She can move her hands a little to maneuver her costly new wheelchair, but if her arms fall in her lap, she can’t pick them up. She can’t move her legs at all.

Lorey’s problems stem from spinal muscular atrophy, a neuromuscular disease that eventually will kill her. Diagnosed as an infant, she was not expected to live past 2.

Instead, she has lived long enough to need three wheelchairs – which she suspects may not please her insurance company.

“People who would be dead are living longer, so insurance companies are having to put out more money,” she said in a soft, watery voice.

It took months, and three appeals of her insurer’s denials, to get the wheelchair she now uses in her family’s small home in Gibbsboro, Camden County.

People who evaluate and fit patients for wheelchairs say cases like hers have become more common in recent months. They say many requests for the kind of chairs that patients like Lorey use – expensive, motorized units with multiple custom features – are being denied because insurers and Medicare officials are worried about high costs and fraud. Doctors, physical therapists, and patients must appeal the decision, or else the patients give up and accept lesser chairs.

“It’s gotten to the point where words are not enough to convince the medical directors” of insurers, said assistive technology professional Robert Townsend of Jeff Quip, a Boothwyn company that supplies complex chairs.

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Loan programs rescue patients

September 2, 2011

Loan programs rescue patients

stltoday.com | September 1, 2011 | BY CYNTHIA BILLHARTZ GREGORIAN

Some days, Ben Shaffer, 9, is so weak and tired he can barely walk into his fourth-grade classroom at Tillman Elementary School in Kirkwood.

“He was diagnosed with muscular dystrophy three years ago, but the doctors are not sure they have it right,” says his mother, Jennifer Shaffer.

Nevertheless, Ben’s doctor registered him with the Muscular Dystrophy Association, which lent him a wheelchair for days when walking is too hard.

Taylor Branson, 11, of Eureka, has spinal muscular atrophy type II, and is scheduled to have spinal fusion surgery in coming weeks, her mother, Julie Branson, said. When Taylor returns home, the Bransons will need a hospital bed and a hydraulic sling lift to move her between wheelchair and bed.
Not a problem, said the MDA. The group will have its people at United Seating & Mobility in Earth City collect the items from the MDA’s loan closet in Portage Des Sioux and deliver them to the Bransons for use as long as they need.

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Local family works to meet daughter’s needs

July 21, 2011

Local family works to meet daughter’s needs

New Richmond News | July 20, 2011 | By Jackie Grumish

Gabbie Bark was given just six months to live.

Thankfully that first diagnosis proved wrong, due to a general misunderstanding about Spinal Muscular Atrophy (SMA). The 2-year-old’s future is much brighter than first suspected.

That doesn’t mean her current health status and her future won’t be filled with challenges.

An inherited disease, SMA leads to the loss of muscle and motor function. The rare disease is the result of the absence of or defect in the individual’s Survival Motor Neuron 1 gene.

“One in 40 people are carriers,” explained Gabbie’s dad, Jamie. “Both me and my wife (Jackie) are carriers, so from a numbers standpoint it’s pretty rare to have both parents as carriers.”

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A surprise and chance of independence for wheelchair-bound Wareham woman

July 10, 2011

A surprise and chance of independence for wheelchair-bound Wareham woman

SouthCoastTODAY.com | July 10, 2011 | By Brian Fraga

WAREHAM — DaLiza Cardoza thought she was just going to be named an assistant basketball coach.

But when the 18-year-old arrived Saturday at the Wareham Youth Athletic League’s sun-baked courts, she found Patrick Brent standing in front of a 2008 Honda Element, waving a set of keys.

“This is your car,” said Brent, a marketing director for Freedom Motors, a Michigan company that converts vehicles to wheelchair accessibility.

For Cardoza, a recent graduate of Wareham High School who was diagnosed at age 2 with spinal muscular atrophy, the surprise vehicle meant a chance at an independent life as she prepares to attend college this fall.

“I can’t even explain how I feel,” said Cardoza, as she was surrounded by a crowd of beaming friends and relatives.

“It’s a blessing.”

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