Wenona pupils learn life lesson from Karni Liddell

September 6, 2012

Mosman-Daily | September 2, 2012 | By Simone Roberts

WENONA students learned a valuable lesson in overcoming adversity from Australian Paralympic swimmer Karni Liddell.

The bronze medallist shared the story of her triumph over spinal muscular atrophy with students.

“I was born missing a few little muscles and my parents were told I wouldn’t walk or crawl,” she told the girls. Refusing to accept defeat, her father created a walking frame for Karni and she learned to walk.

With her competitive spirit, she honed her strengths in swimming to compete at the Paralympic Games in 1996 and 2000, where she won bronze medals.

“It doesn’t matter what body I have been given, what family I am from, where I was born, or how much money I have got. You can do whatever you want with your life,” she said.

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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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Mya’s dream finally comes true

August 2, 2011

Mya’s dream finally comes true

The Border Mail | August 3, 2011 | By Di Thomas

WHAT began as one little girl’s dream to help her friend gain her independence yesterday had its sequel when Rajah Sutherland and her family took delivery of a new car.
Rajah, 6, has spinal muscular atrophy, which means she can’t walk and requires a wheelchair to get around.

The Walk for Wheels for Rajah project began earlier this year when Albury’s Mya Irving, 8, who has cerebral palsy, asked why Rajah wasn’t able to get in and out of her parents’ vehicle in her wheelchair, in the same way she was able to.

In April, Mya walked the 1.2 kilometre-length of Dean Street to kick off the fund-raising for the money to buy and modify a car to take a wheelchair.

In the months since, she has raised $40,000 for the car and its modification costs.

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Miley Cyrus meets a fan and gets a tan in Adelaide

July 6, 2011

Miley Cyrus meets a fan and gets a tan in Adelaide

AdelaideNow | July 2, 2011 | By Matt Gilbertson

MILEY Cyrus caught up with one of her number one fans before her rather raunchy show at Adelaide Entertainment Centre this week.

Sixteen-year-old Tina May, who suffers from spinal muscular atrophy, has been a patient in the Women’s and Children’s Hospital for 12 months, where her room is plastered with Miley posters and even a fabulous Miley bedspread.

But, needless to say, nothing was going to keep Tina away from Wednesday night’s show.

In the lead-up to what she described as “the single most exciting thing in my life”, Tina checked herself in for a Miley makeover, having her hair and make-up done by City Chic and Iris Boutique.

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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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Raising funds for all-terrain wheels

May 27, 2011

Raising funds for all-terrain wheels

Mercury Daily | May 27, 2011 | By Grier Williamson

COURTNEY Haddrick, 17, is on a mission to make Tyson Jensen’s dream a reality.

Tyson, 25, is confined to an electric wheelchair.

“He has a degenerative disease called spinal muscular atrophy (SMA) which affects his muscles, making them weaker as he gets older,” Miss Haddrick said.

Mr Jensen visits the Mackay Engendi Disability Respite and Activity Centre and his dream is to own an ATV (all terrain vehicle) wheelchair that will enable him to do the things he enjoys, such as going to the beach, fishing and his favourite hobby of pig hunting.

She is independently raising funds through her own initiative. “I have a made a tip jar with a sign that tells people what the money goes towards. I have it at my workplace at Black’s Beach Seafood,” she said. “I have been fundraising for three weeks with the tip jar and so far I have raised about $300,” she said.

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Paralympian launches Red Shield Appeal

May 12, 2011

Paralympian launches Red Shield Appeal

Port Macquarie News | May 13, 2011

AN INSPIRATIONAL Paralympian will arrive in town next week to help launch The Salvation Army Red Shield Appeal.

Diagnosed with spinal muscular atrophy at birth, Karni Liddell defied doctors’ expectations that she would live past her teenage years and went on to become a Paralympic swimmer.

Port Macquarie-Hastings Salvation Army Red Shield Appeal business committee chairman Glen Towle said he hoped as many people as possible would attend the breakfast to support the organisation and hear Ms Liddell speak.

“She’s an outstanding, high-quality presenter who has an amazing, inspirational story to tell,” Mr Towle said.

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My Voice: Lisa Evans

April 20, 2011

My Voice: Lisa Evans

Melbourne Weekly | April 19, 2011 | By Lisa Evan

Lisa Evans, 41, will embark on a two-week trek in France later this year in honour of her 12-year-old son Jack, who has a degenerative neuromuscular disease.

Jack was diagnosed with spinal muscular atrophy when he was eight months old and we were told not to expect him to live past two. He suffers from a genetic disease which, in short, affects the motor neurons in his spine and causes his muscles to waste away. As a result, Jack is unable to sit, crawl or walk. He cannot swallow, so he is fed through a tube and he’s also susceptible to recurrent chest infections. He relies on a ventilator to breathe at night and always has a suction machine with him to clear secretions. Jack spends his life in an electric wheelchair.

The condition occurs in one in 10,000 live births and is the greatest genetic killer of kids under the age of two.

I’m taking part in the seventh ChallengeMD! in Mt Blanc, France, to raise more than $250,000 for the Muscular Dystrophy Association. There’s 17 Aussies participating in the 14-day trek, from June 24 to July 8, which circumnavigates Mt Blanc through France, Italy and Switzerland.

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DIY DNA tests tell couples about their unborn baby’s genetic disease risk

March 28, 2011

DIY DNA tests tell couples about their unborn baby’s genetic disease risk

Press Release | March 27, 2011

A new do-it-yourself DNA kit, set to be launched by an Australian company, will allow couples to find out if they could pass on a genetic disease to a baby.

In January, Sydney-based company Lumigenix, with laboratories in Melbourne and Los Angeles, began offering direct-to-consumer genetic testing of the risk of developing cancers, heart disease, type 2 diabetes and other diseases.

It will release a pre-conception testing kit in six months, allowing expecting and prospective parents to find out if they possess genes that make them carriers of about 250 recessive genetic diseases, including cystic fibrosis, spinal muscular atrophy, Tay-Sachs disease and Bloom syndrome.

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Mya’s brave walk for friend

March 24, 2011

Mya’s brave walk for friend

The Border Mail | March 24, 2011

A FRIENDSHIP forged through hardship is the driving force behind a seven-year-old cerebral palsy sufferer’s plan to walk Dean Street.

Albury’s Mya Irving is hoping people will sponsor the eight-block walk next month in a bid to raise the $35,000 needed to modify a car to take an electric wheelchair for her friend Rajah Sutherland, 5.

Rajah suffers from spinal muscular atrophy, a condition that weakens the spine and muscles and forces her to rely on a wheelchair.

The pair met through a disability support service and hydrotherapy.

Without the modified car her Jindera mother Ellen Sutherland is largely housebound.

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