Semmes family gets new pool, courtesy of Magic Moments

June 10, 2011

Semmes family gets new pool, courtesy of Magic Moments

AL.com | June 6, 2011

SEMMES, Alabama — Thanks to Magic Moments, an organization established in 1984 in Alabama to grant non-medical wishes to children 4-18 living in Alabama with life-threatening or life-altering medical conditions, there is a new saltwater swimming pool in Semmes at the house of Chris Martin.

Martin’s 8-year-old daughter, Maddy, was diagnosed with spinal muscular atrophy when she was only 7 months old. The disease has left Maddy with muscles too weak to lift her arms or move her legs.

“She can’t move at all out of the water except to wiggle her fingers, but in the water, she can move more. She giggles and laughs,” said Martin.

He discovered Maddy’s ability to move in water when they went on family vacations and stayed in a place with a swimming pool.

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Brody’s smile makes efforts worthwhile

June 10, 2011

Brody’s smile makes efforts worthwhile

The Examiner | June 6, 2011

MAYFIELD mother of three Bianca Dance said a weight was lifted off her shoulders yesterday – and a smile from her three-year-old son Brody Westergreen was just the icing on the cake.
Ms Dance spent the past three months organising a family fun day, which was held at the Rocherlea Football Ground yesterday.

Money raised at the event will help buy Brody, who has type two spinal muscular atrophy, an electric wheelchair.

Brody’s debilitating disease is slowly robbing him of his ability to move his arms and legs, and will one day take his life.

More than $20,000 had already been raised for the wheelchair, and Ms Dance was hoping an extra $10,000 would be raised at the fun day.

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Wekiva High valedictorian’s life a victory over disability

June 3, 2011

Wekiva High valedictorian’s life a victory over disability

Orlando Sentinel | June 3, 2011 | By Joseph Freeman

The valedictorian at Wekiva High School near Apopka succeeded in 14 Advanced Placement courses, but she lacks the strength to operate a stapler. She earned a grade-point average of 5.1, but whenever she started a new class, she had to ask another student to help her take books out of her backpack.

Audrey Winkelsas’ life has been full of such difficult contrasts. Yet when she emerged from behind the stage in a wheelchair to raucous applause and a standing ovation during graduation ceremonies Friday, she finally had a moment to focus only on the victories. In her small, frail hands, she held a copy of her valedictory speech.

Winkelsas, 18, has spinal muscular atrophy, or SMA, a disease in which the body’s muscles degenerate. Although her affliction is crippling and incurable, she is a dazzling student who has received a full scholarship at the University of Miami, where she plans to study the disease that has dominated her life.

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A van for Baby Michael: Albrightsville family loses vehicle for disabled son in fire

June 3, 2011

A van for Baby Michael: Albrightsville family loses vehicle for disabled son in fire

Pocono Record | June 2, 2011 | By Vinny Vella

Kerry Benincasa lost her van on the backroads of the West End.

At a stop sign along Route 903, her brakes weren’t responding. As she coasted to a stop and put the vehicle in park, smoke billowed from under the hood.

“Jump out of the car as soon as Mommy stops,” she told her 5-year-old daughter Cecelia.

The two escaped unscathed. The same can’t be said about the family vehicle: A brake line needs replacing.

But Benincasa of Albrightsville is more thankful than upset. She considers the whole ordeal an act of God.

“If it didn’t happen yesterday, it would’ve happened today, while we were traveling on I-80 with Michael in the car,” she said.

Michael is Benincasa’s soon-to-be 4-year-old son. He was born with Type 1 Spinal Muscular Atrophy, a condition that has rendered him quadriplegic and unable to breathe without assistance.

Had he been in the van — a 1986 Chevrolet outfitted with a wheelchair lift — Michael would’ve been strapped in and difficult to move.

“He’s completely flaccid; he can’t even lift his head up,” Benincasa said.

Outside the van, Michael would still not have been safe. Without his bulky portable ventilator, he would have been unable to breathe.

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Big Meaning in the Smallest Movements

June 3, 2011

Big Meaning in the Smallest Movements

BU Today | June 2, 2011 | By Robin Berghaus

Vodpod videos no longer available.

Born with spastic quadriplegia and cerebral palsy, 49-year-old Rick Hoyt has never been able to speak or use his hands to write. But that doesn’t mean he can’t communicate.

Hoyt (left, SED’93), who is best known for competing in more than 1,000 races, pushed in a wheelchair by his father, Dick Hoyt, is testing assistive technology developed through a decadelong collaboration between Margrit Betke, a College of Arts & Sciences associate professor of computer science, and James Gips, a Boston College professor of computer science, with help from more than 50 students.

Camera Mouse, a tool for people with medical conditions such as cerebral palsy, spinal muscular atrophy, ALS, multiple sclerosis, and traumatic brain injury, employs a computer webcam to lock onto and track a chosen section of the user’s face—a nostril or the tip of an eyebrow, for example—and then links that person’s head movement to a cursor on the screen. Move right and the cursor goes right. If Hoyt pauses for more than one second, dwelling over a button or link, it clicks to active.

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Rockville Centre’s woman of distinction

June 1, 2011

Rockville Centre’s woman of distinction

LIHerald.com | June 2, 2011

Rockville Centre resident Debbie Cuevas was recently honored as one of the state Senate’s 2011 women of distinction. She joined other notable women at a reception on May 24 in the State Capitol building. Created in 1998, the Women of Distinction program honors outstanding women from across New York state who exemplify personal excellence, or whose professional achievements or acts of courage, selfless integrity or perseverance serve as an example to all New Yorkers.

“I am proud to honor Rockville Centre’s Debbie Cuevas as my 2011 Woman of Distinction,” said Senator Majority Leader Dean Skelos in a written statement. “Ms. Cuevas is mother, friend, nurse, caregiver, physical therapist, [spinal muscular atrophy] activist, and much more rolled into one. A true pioneer, Ms. Cuevas founded the Greater New York Chapter of Families of SMA in 2006, as a way to give back to her community. As [its] president [she] is instrumental in serving over 500 families who have been affected by Spinal Muscular Atrophy and continues to make a positive difference in the lives of others every day.”

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Brookhaven’s Whiz Kid

June 1, 2011

Brookhaven’s Whiz Kid

Brookhaven Patch | May 10, 2011 | By Andrea Botham

Aleena Hope Miller was born 7 years ago with a genetic disorder that has a typical lifespan of 6 months to 2 years. Yet this spunky girl has beat the odds with this defect that causes Spinal Muscular Atrophy (SMA) Type I, the most severe and fatal form of the disorder and has become an inspiration to her family, friends and neighbors.

SMA Type 1 restricts Aleena’s ability to move, swallow or breathe on her own, but this doesn’t stop her from living her life to its very fullest. Despite her full body paralysis she loves to learn, read books, watch Barbie videos, and enjoys her American Girl dolls.

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Birmingham youngster surprised with new wheelchair

May 31, 2011

Birmingham youngster surprised with new wheelchair

Birmingham Mail | May 30, 2011 | By Christina Savvas

A DISABLED youngster was stunned when she was given a new wheelchair by a volunteer she had gone to surprise with a thank you for his work.

Libby Smalley, who has the muscle-wasting condition spinal muscular atrophy, presented a gift to Alexander Patrick to mark the 25th anniversary of his grant-giving fund the Muscular Dystrophy Campaign’s welfare trust .

The 11-year-old, from Castle Vale, handed over a collage of thank-you letters from some of the thousands of children and adults helped by the fund.

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‘The Amazing Race’ meets ‘Survivor’ in Lowell — and it’s all for charity

May 31, 2011

‘The Amazing Race’ meets ‘Survivor’ in Lowell — and it’s all for charity

LOWELL — Ever worn a bologna mask? Careened down a 200-foot Slip and Slide covered in chocolate syrup and soap bubbles? Kissed a dog’s um … hindquarters?

No? Well, then you’ve never participated in SmithFest.

“It is like a mix of The Amazing Race, Survivor and the craziest scavenger hunt you could ever imagine,” Fred Smith, 31, says of the massive, one-day extravaganza that last year raised $5,000 for Kids in Disability Sports.

This year, the event, scheduled for Oct. 1 at Lowell Memorial Auditorium, will benefit the Make-A-Wish Foundation of Massachusetts and Rhode Island, and Families of Spinal Muscular Atrophy.

The latter is in honor of Coby Kulis, the 5-month-old son of Dave and Lori Kulis of Methuen who died of the devastating motor neuron disease earlier his year. SMA is the number-one genetic killer of children under the age of 2, affecting 1 in every 6,000 babies.

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Donated van to help family

May 31, 2011

Donated van to help family

Beloit Daily News | May 27, 2011 | By Rob Baxter

Listen closely and you’ll hear Keyonah (pronounced Key-on-uh) Spencer, 4, utter the words “Ace” and “Goodwill.” Her mom, Jenni Spencer, says those are her two favorite stores to go to in Beloit.

For many families, a trip to Ace to get flowering plants or a new tool or a rummage sale type, treasure hunt at Goodwill takes only minutes. For Keyonah, it’s a bit more daunting.

Keyonah was diagnosed with Spinal Muscular Atrophy with respiratory distress when she was 3 months old.. At 9 months, she was placed on a ventilator to save her life. Due to the degenerative nature of the disease, Keyonah is confined to a wheelchair and unable to hold her head up without support. Her muscles are so weak she cannot breath on her own.

“She is getting really big for my car and getting her in and out of there has become very difficult,” Jenni said. “This vehicle will allow us to do that. I don’t know if we would be able to go anywhere otherwise.”

Click HERE or on the image below to read more…

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