Making waves; Medical students begin program that allows special-needs kids to splash around with joy

May 16, 2011

Making waves; Medical students begin program that allows special-needs kids to splash around with joy

The Chronicle Herald | May 16, 2011 | By Laura Fraser

Van Bernard’s father lifts him from his motorized wheelchair. The three-year-old wriggles like a fish on a line desperate to return to the water.

Colin Bernard lowers his son to the lip of the pool, watching the boy’s legs dance in the waves made by other swimmers. Van scrunches up his nose — “It’s cold!” — but still holds out his hands.

And then he leans in to his instructor and splashes down. He squeals, smiles and starts kicking, clutching a steady pair of forearms.

“For the first time on his own, when he was in the pool, (it) was incredible; I cried,” Julie Clegg says of her son.

“We have a specialized head float where he can be completely independent and float around the pool. . . . He was pretty intimidated at first, but (then) he kicked, he was moving his limbs and his arms, and it was just a sense of freedom and independence.”

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Posted by stronwi

Chilliwack group hopes to raise spinal muscular atrophy awareness

April 17, 2011

Chilliwack group hopes to raise spinal muscular atrophy awareness

Chilliwack Progress | April 15, 2011 | By Katie Bartel

Spinal muscular atrophy is the number one genetic killer for babies, and yet there is no cure or treatment.

In fact, when children under the age of two are diagnosed, their parents are often told to take them home and love them for as long as they have them.

That’s not good enough for a group, now based in Chilliwack, fighting for both treatment and cure.

Families of SMA Canada, which were previously based in Manitoba, moved to Chilliwack when Susi Vander Wyk, a longtime board member, took on the non-profit organization’s presidency role.

Vander Wyk, whose 14-year-old daughter has SMA, is determined to increase the organization’s support for children, parents and families with SMA.

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Posted by stronwi

Jenny named ambassador

April 9, 2011

Jenny named ambassador

Canada East | April 9, 2011 | By Carole Gignac

CAMPBELLTON – It takes 16 muscles to hop on one foot – and plenty more to smile like Jenny Larocque, the 2011 Hop for Muscular Dystrophy ambassador for the province.

Jenny is a Grade 1 student at Lord Beaverbrook School and the fact that she has spinal muscular atrophy does not slow her down. Jenny likes to watch the TV sitcom iCarly, play on the Wii, and she loves to play with her big brother, Shane, and her best friend, Selena. She also enjoys camping. Jenny recently joined Brownies and she is very excited about that.

On April 21, Lord Beaverbrook Elementary School will be hosting a HOP for Muscular Dystrophy event for the students. The HOP for Muscular Dystrophy is a national educational fundraising initiative. At the HOP event, children can hop, dance or move – according to their own ability – to music. Funds raised support the tens of thousands of Canadians affected by a neuromuscular disorder through research for a cure, education and services.

Click HERE or on the image below to learn more…

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Local girl shines at Leduc Firefighter Gala

February 17, 2011

Local girl shines at Leduc Firefighter Gala

The Leduc Rep | February 17, 2011 | By Bobby Roy

For anyone who has suffered a sprained muscle or a broken bone of some sort, the time it takes to heal and get back to the point of strength before suffering the injury takes a long period of time, but the strength will return.

For someone who has been diagnosed with Spinal Muscular Atrophy or SMA, losing strength in their muscles happens over a period of time and since there is no known cure for SMA, that strength will never return.

11-year-old Helen Na knows how this feels and has been dealing with SMA for as long as she can remember. At just three-years-old Helen was diagnosed with Spinal Atrophy Muscular Dystrophy.

Last night, Helen was the guest of honour at the Leduc Fire on the Roof Ambassador Gala and she spoke to the large crowd about her story of a young girl who has to go through the daily chores like anyone else, but has to do so while fighting the losing battle against muscular dystrophy.

Click HERE or on the image below to read more…

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Tot touched many

February 5, 2011

Tot touched many

The Intelligencer | February 5, 2011 | By Jerome Lessard

Karen Walsh never imagined having to decide to keep her baby alive or help him die.

Reece Miller Elliott was only on earth for seven weeks, but he was loved and brought love every second he was here.

Reese was born at nine pounds, two ounces on July 20, 2010, the day of his sister Daisy’s third birthday. Less than three weeks later, Reece was diagnosed with spinal muscular atrophy (SMA) Type 1, a collection of different muscle diseases also know as Werdnig-Hoffman disease.

Click HERE or on the image below to read more…

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Posted by stronwi

No sugar-coating for disability exhibit

January 31, 2011

No sugar-coating for disability exhibit

The Vancouver Sun | January 31, 2011 | By Kevin Griffin

VANCOUVER — For disability rights activist Catherine Frazee, the personal overlaps with the political even when she doesn’t intend it.

That happened with Frazee’s recent journey to Vancouver from Toronto for Out From Under, a unique exhibition on the social history of disability in Canada.

As one of its three curators, she felt it was important to be here for the exhibition’s opening during the Paralympic Winter Games.

Frazee, the director of Ryerson’s Institute for Disability Studies, can’t fly for medical reasons having to do with living with spinal muscular atrophy, a genetic neuromuscular disease characterized by the degeneration of the motor neurons. When she travels, she is accompanied by an attendant and Patricia Seeley, her life partner.

The only option for her was to take the train.

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Family turns grief into a gift for toddler

January 28, 2011

Family turns grief into a gift for toddler

Global | January 28, 2011 | By Linda Hoang

Click HERE for the video.

When Kaitlyn Harapchuk was three months old, she was diagnosed with spinal muscular atrophy, a disease that affects muscle movement.

Doctors told Kaitlyn’s mother Hali that she probably wouldn’t live to be a year old. But Hali wouldn’t accept it.

“There’s always miracles,” she said.

Hali found special doctors and support groups that could help her daughter live well past the one year benchmark she had originally been given.

Click HERE or on the image below to read more…

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Start your engines

January 11, 2011

Start your engines

tbnewswatch.com | January 11, 2011 | By Jeff Labine

Zachary Pylychuk loves school.

The 7-year-old Grade 2 student from St. Thomas Aquinas takes his power chair to get to his classes. Zachary has Spinal Muscular Atrophy, a weakening of muscles that requires him to use the chair. Zachary became the ambassador for Easter Seals three years ago when a friend mentioned that his personality would make him an ideal candidate.

A normal day for Zachary starts with early morning stretches, which he said isn’t fun but necessary. After breakfast, he goes into a standing aid to increase bone density for his legs and then it’s off to school.

Click HERE or on the image below to read more…

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Ajax student uses webcam to join peers in classroom

December 17, 2010

Ajax student uses webcam to join peers in classroom

DurhamRegion.com | December 17, 2010 | By REKA SZEKELY

AJAX — Like any other Grade 1 student, Tristen Moses gets excited about going to school.

But instead of a traditional classroom, Tristen logs on via webcam from his living room where he can see his classmates at Bolton C. Falby Public School and his classmates can see him.

It’s all part of an innovative program created by Tristen’s teachers and the Durham District School Board and a team at the Grandview Children’s Centre.

Tristen has spinal muscular atrophy and was diagnosed with the condition when he was just 17 months old.

Click HERE or on the image below to read more…

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