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.

Click HERE or on the image below to read more…

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.

Click HERE or on the image below to read more…

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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Swimming with sharks

March 16, 2011

Swimming with sharks | 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.

Click HERE or on the image below to read more…

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.

Click HERE or on the image below to read more…