Swimming with sharks

March 16, 2011

Swimming with sharks

ABC.net.au | March 15, 2011 | By Nathalie Fernbach / Paula Tapiolas

Seven year old Oonoonba student Byron Holman and his mum Meghan spoke with Paula Tapiolas about the Sharkbait Kids program and how swimming makes Byron feel ‘normal’.”

He feels like a normal little boy in the water.” Says Meghan Holman of her son Byron.

“If he could swim everyday he would, he really enjoys it because it is easy on his muscles”.

Seven year old Byron has a rare condition called Spinal Muscular Atrophy (SMA) and is one of only four people with the disease in north Queensland.

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Tristram keeps rolling with the hits

March 2, 2011

Thank you to Steven Parry for sharing this great, inspiring article with us.

Tristram keeps rolling with the hits

The Courier-Mail | February 5, 2011 | By Mike O’Connor

TRISTRAM Peters was waiting for me in his wheelchair. “It’s for you, to give you an idea what it’s like,” he says, pointing to an empty wheelchair.

“You steer with this,” he instructed, pointing to a joystick on the armrest as I slid awkwardly into the chair.

I pushed the stick forward with my right hand and accelerated across the room, clutching the plastic hockey stick he had just given me in my other hand.

For the next 10 minutes we both whirred across the floor at MontroseAccess – a rambling complex at Corinda which offers therapy and respite for children and young adults with physical disabilities – as Peters schooled me in the art of wheelchair hockey.

Peters is 20 and knows about wheelchairs, having been in one since he was four.

“I’ve got spinal muscular atrophy type 2, which is a form of muscular dystrophy. It was an early progression so I never really walked,” he says.

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Swimming with sharks part of doctor’s orders

March 1, 2011

Swimming with sharks part of doctor’s orders

Townsville Bulletin | March 1, 2011 | By Ryan Matheson

SHARING the water with more than five species of sharks isn’t about to stop brave youngster Byron Holman from enjoying one of his favourite pastimes.

The seven-year-old is set to come face-to-face with more than 50 sharks during a daring dive at Sea World on the Gold Coast as part of the Shark Bait Kids program tomorrow.

Young Byron has spinal muscular atrophy, a rare genetic condition which causes a weak respiratory system and progressive muscle degeneration.

The Oonoonba State School student is easily thrown off balance, restricting his ability to run freely like other kids his age.

He takes part in two hydrotherapy lessons each week providing muscle growth and respiratory benefits.

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Mum’s fight for a cure

February 10, 2011

Mum’s fight for a cure

Waverley Leader | February 10, 2011 | By Michelle Carnovale

IN JUST two short years, Julie Cini lost her two baby daughters to a deadly and incurable genetic disease.

Both were born with spinal muscular atrophy (SMA), a muscle-wasting disease that leaves a person unable even to muster the strength to cough.

Tragically, in the same period, Ms Cini also lost her partner, Ross Brownlaw, in a car accident, leaving her at 13 weeks pregnant to build the charity they had established just a year earlier to support families affected by SMA.

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Not just a level playing field

January 24, 2011

Not just a level playing field

ABC.net.au | January 24, 2011 | By Tristram Peters

As any of my friends would tell you, I’m addicted to sports. From the spectacle that is the All Blacks performing the haka – a sight I admire even as an ardent Wallabies supporter – to the fervour that erupts each time the Football World Cup comes around, I love it all. Well, except for golf, but that’s beside the point.

It started at a young age with me. I’m told by my dad that I watched the ’91 Rugby World Cup with him when I was one year old. I may have been more interested in sleeping and eating at the time, but I figure that’s where it all began. At a very young age, I had decided that I wanted to play sport for a career – be it rugby union, league, AFL, or football.

But my dreams were dashed by a form of muscular dystrophy; a wonderfully titled condition called Spinal Muscular Atrophy Type 2. Essentially, my muscles were slowly becoming weaker, so weak that I was soon confined to an electric wheelchair.

Click HERE or on the image below to read more…

Lions help Tait sleep tight

January 20, 2011

Lions help Tait sleep tight

The Northern Rivers Echo | January 21, 2011 | By Mel Carrero

The Jenkins family will finally be able to rest easy after Lions donated a bed worth $15,500 to them on Monday.

Tait Jenkins, a 14-year old boy from Modanville, suffers from spinal muscular atrophy (SMA) and has no function of his muscles from the neck down and requires to be turned each hour during sleep, leaving his parents Fiona and Royce incredibly tired and Tait very dependent on their help.

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Big jump for charity

January 12, 2011

Big jump for charity

North Shore Times | January 13, 2011 | By Sarah Coddington

A DARING sky jump for charity landed Waimon Thant-Cyn with a broken hip but she says it was all worth it.

The Pinehill resident, who uses a wheelchair, was born with a neuromuscular disease, spinal muscular atrophy.

She was not diagnosed until the age of 10 when she moved to New Zealand from Myanmar.

The condition causes loss of motor neurones within the spinal cord and as a result muscles become weak.
“I’ve always done things to the best of my ability and I’ve never used my disability as an excuse not to go for something that I really wanted,” she says.

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Bromeliad society rushes to aid

December 23, 2010

Bromeliad society rushes to aid

Coolum News | December 24, 2010

WITHIN the space of a couple of weeks, Ronda Vijsma has seen the highs and lows of human nature.

Recently thieves stole 10 one-metre high bromeliad blanchetianas from the front garden of her Mudjimba home.

To make matters worse, Ronda grows the plants to raise money for a trust fund for her three-year-old grandson, Kazi, who is confined to a wheelchair.

Click HERE or on the image below to read more…

Carlingford art show to raise research cash

December 10, 2010

Carlingford art show to raise research cash

Hills Shire Times | December 10, 2010 | By Vanessa Bradbury

JENNIFER Burns works as a university relationship manager for the Actuaries Department by day and allows her creative side to reign in her spare time.

This Carlingford visual artist will be hosting an art exhibition at her home on Sunday in a bid to not only showcase her talent but also raise much-needed funds for the Spinal Muscular Atrophy Association of Australia (SMA).

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No cure for Georgia

December 9, 2010

No cure for Georgia

Western Advocate | December 10, 2010 | By Jo Johnson

Georgia Jade Millwood is doing it tough. She suffers from a rare genetic condition called Spinal Muscular Atrophy (SMA) Type One.

It is a progressive degenerative disease that affects the nerves and muscles.

Infants with SMA struggle with normal bodily functions and there is a constant risk of respiratory infection and pneumonia. It cannot be cured.

The life expectancy of this condition is about one year and Georgia is 11 months old.

She has recently taken a turn for the worse and it is unlikely she will see her first Christmas.

Click HERE or on the image below to read more…