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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Ski-a-thon celebrates Mitchell’s life

October 10, 2011

Ski-a-thon celebrates Mitchell’s life

The Daily Advance | October 8, 2011 | By Toby Tate

EURE — This year’s Haley Mitchell Ski-a-thon for Spinal Muscular Atrophy (SMA) is significant not only in the fact that it’s the last one, but also because it would have been Haley’s 14th birthday.

“It’s tough to be here this year without Haley,” said Valerie Mitchell, Haley’s mother. “Personally I just don’t have it in me to keep doing this big event.”

SMA is a deadly neuromuscular disease that deteriorates the spinal cord cells that control muscular function. Afflicted with SMA since birth, Haley was given only two years to live. She beat the odds, passing away on Oct. 26, 2010, just 2½ weeks after her 13th birthday.

Haley’s father Jeff Mitchell, who was waterskiing at Saturday’s event at Beaver Lake in Gates County, said he was happy with the turnout and the support they have received over the years. To date, the ski-a-thon has raised about $400,000 for Families of SMA, according to Mitchell.

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In Summer’s memory… SMA Awareness Month in Narooma

September 8, 2011

In Summer’s memory… SMA Awareness Month in Narooma

Narooma News | September 7, 2011 | By Stan Gorton

SPINAL Muscular Atrophy (SMA) Awareness Month was a massive success in Narooma and honoured the memory of the beautiful Summer Carol Lynn Hayes.
This is according to Summer’s mother Tamara Hayes, who is driven by the memory of her daughter who died from SMA earlier this year.

There is still time to help out by booking a table at the upcoming charity night at the Narooma Golf Club as there are plenty of spaces available.

The former Narooma resident now works for the Spinal Muscular Atrophy Association of Australia in Canberra.

Proof of campaign’s success is her belief that Narooma and surrounds are now aware that SMA is the number 1 genetic killer of infants under the age of 2.

One in 35 of us carry the gene, and if two people carrying this gene together have a baby there is a one in four chance that the baby will suffer from SMA.

And 80 per cent of babies with SMA have Type 1, for which there is no cure and means they will not live to see their second birthday.

Babies born with Type 2 or 3, will need around the clock assistance for their whole lives and life expectancy will be reduced due to age of symptoms onset.

Awareness of SMA was given a boost in Canberra recently when Steve Doszpot, a local Liberal, gave a speech in the Legislative Assembly highlighting the effects of SMA on both children, and the families and friends who support them.

“He acknowledged the tragedy that had befallen my family when we lost Summer, earlier this year and he offered to help with any future fundraising activities and awareness programs that would be held in order to further spread an understanding of this killer disease throughout the community,” she said.

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‘Madison’s Place’ vows to put smiles on many faces

September 2, 2011

‘Madison’s Place’ vows to put smiles on many faces

Woodbury Bulletin | September 2, 2011 | By Rihem Feshir

Woodbury resident Dana Millington wants her children to remember their sister, Madison Claire, in a happy sense. To be able to smile when they hear her name.

Though still grieving after losing their baby girl at age of 2 from complications of spinal muscular atrophy (SMA), the Millingtons knew they wanted to do something to help children with disabilities.

They wanted to bring “Madison’s Place” to the east metro.

The all-inclusive playground will be designed with a special, wheelchair-accessible, rubber surface for children with physical hardships who cannot otherwise enjoy summers at the park. Plans call for the playground to be built at Bielenberg Sports Center.

Fundraising for the project began in 2008 and since then, the Madison Claire Foundation raised $60,000. A September gala is aiming to collect another $100,000.

“I hope it’ll be full of smiles and busy,” Millington said of the playground.

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Matt Arnold, an ‘inspiration’ for people with disabilities, passes away

August 24, 2011

Matt Arnold, an ‘inspiration’ for people with disabilities, passes away

Bay City Times | August 23, 2011 | By Zachary Reichard

BAY CITY — After a battle with liver failure and pneumonia, disability advocate and member of New Dimensions staff Matt Arnold has passed away at 52.

Arnold, a Bay City native, suffered from Spinal Muscular Atrophy, a form of Muscular Dystrophy, which confined him to a wheelchair at a young age.

“He was absolutely wonderful,” New Dimensions’ executive director Patsy Powell said. “He was an inspiration to everyone who worked here.”

Arnold, who was featured in a Bay City Times story in 2008, never let the challenges he faced bring him down, his mother Patricia said.

“His handicap never held him back at all, he would just go go go all the time,” Patricia said. “Nothing stopped him, he fought everyday.”

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Pedal-powered tribute

August 23, 2011

Pedal-powered tribute

ThisIsWiltshire.co.uk | August 20, 2011 | By Will Frampton

A WESTBURY couple are holding a fundraising day at Westbury Town Football Club in memory of their baby Maisie, who died last year.

Dad Jim Pickernell, 30, has played with the reserves for the club, where his father-in-law is chairman, for five years, and thought it would be the perfect venue for a children’s bike and trike challenge.

The couple, of Timor Road, are hoping to raise as much as possible for the Children’s Intensive Care Unit at Bristol Children’s Hospital, where Maisie was cared for.

Maisie died last May aged just nine weeks and four days, after suffering from spinal muscular atrophy, a genetic condition which is most severe in babies. The event, on September 4, will raise money through sponsorship as youngsters aim to complete five full laps of the pitch.

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MARIA LUISA SALCINES: Life example we should all follow

May 18, 2011

MARIA LUISA SALCINES: Life example we should all follow

The Monitor | May 17, 2011

When my family and I moved to north McAllen in 1970, we moved into a neighborhood filled with kids.

My brother and I spent our free time playing softball on an empty lot or playing in the canal that was at the end of the block with the Cardenas, Tavares and the Klingberg kids.

Oscar Cardenas was the little brother of my friend Carlos, and we all knew him as the little boy with the cool go-cart. I knew when I met Oscar that he had a disability. Oscar was born with Spinal Muscular Atrophy, but when you were around him it was easy to forget and focus more on Oscar.

As a boy he was a little daredevil, riding his go-cart up and down the street. We would beg him to give us rides, then sit on the hood of the car and hold on for dear life.

He loved to go fast, and every once in a while we would fly off the car.

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Sydney Potjer, 6, touched many lives during her short, but joyful life

May 12, 2011

Sydney Potjer, 6, touched many lives during her short, but joyful life

The Grand Rapids Press | May 11, 2011 | By Brittany Shammas

BYRON TOWNSHIP — Sydney Potjer believed she could do anything anybody else did.

Although a degenerative condition kept her in a wheelchair, the 6-year-old would see a person with a flat tire and want to help them. She saw someone snowboarding on TV and wanted to try it.

“If you asked her, she was the fastest kid in the class,” said her father, Tim Potjer. “She’d be in her power chair and they’d be chasing her around and she’d say, ‘Dad, I’m the fastest.’”

Sydney died Sunday after going into cardiac arrest, likely a complication of Type 1 spinal muscular atrophy.

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Eileen Marie Barclay, 52, counselor

May 10, 2011

Eileen Marie Barclay, 52, counselor

The Philadelphia Inquirer | May 10, 2011 | By Sally A. Downey

Eileen Marie Barclay, 52, of East Oak Lane, who counseled others while struggling with her own crippling disease, died of pneumonia Thursday, May 5, at the Hospital of the University of Pennsylvania.

Ms. Barclay had spinal muscular atrophy, a type of muscular dystrophy.

Her father, Joseph, made her special braces until she needed to use a wheelchair when she was 9. Her mother, Rosemary, was an activist for children with the disease, serving on the board of the Philadelphia chapter of the Muscular Dystrophy Association of America.

“She was raised to believe she could overcome any obstacle,” said her sister, Bunny Schnell.

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Pranav and the Court Decision: Anti-Stem Cell Lawsuit Still Threatens Sick

May 2, 2011

Pranav and the Court Decision: Anti-Stem Cell Lawsuit Still Threatens Sick

Huffington Post | May 2, 2011 | By Don C. Reed

“He is right here,” said Pranav’s mother, in her lilting Indian accent; “would you like to speak to him?”

For a moment I was actually afraid; I don’t know why.

Pranav had Spinal Muscular Atrophy (SMA) a disease like a slow spinal cord injury. Like the paralysis which afflicts my son Roman Reed, SMA is not “catching”, and in any case we were on the telephone.

“Hello,” said a surprisingly deep voice, very dignified. I had a sudden thought — he sounded like a politician, a good one, somebody who would use the power of government to help people.

We talked about Disneyland and Elmo, both of which he strongly approved.

But the conversation was tiring for him, and we soon said goodbye.

He was three years old.

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