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Help and Hope
W-FIVE Staff

It's minutes before show time, and 21-year-old Adrian Anantawan's adept
fingers prance across the strings of his violin. He is warming up for a
feature performance at a high-priced AIDS benefit in Toronto. Adrian's
success as a violinist is remarkable, but what he has overcome to get
where he is, is nothing short of awe-inspiring. Adrian was born without
a right hand.

"I know that, definitely, what I'm doing - at this level at least - has
never been done before," he says.

Adrian is a trailblazer who owes much of his success to the Bloorview
MacMillan Children's Centre in Toronto - Bloorview for short. A
pediatric rehabilitation centre unlike any other in Canada, it's a place
where teachers, doctors, therapists and researchers work together to
enable children with disabilities.

Adrian started coming to Bloorview when he was nine months old. Nine
years later, Bloorview's prosthetics team figured out how to build a
custom prosthesis that would let him grip a violin bow. He calls it his
"spatula." It's a flat, finely machined piece of metal that fits into
the crook of his bow. For Bloorview in-house engineer, Bill Johnson,
making it work perfectly, to fulfill Adrian's individual needs, is
essential.

"A kid comes in here and his life is changed when he leaves here. In
Adrian's case (my job is) perfecting his bowing, so he can do whatever
anybody else can do - or not what anybody else can do - what other
concert violinists can do. Absolutely, I get fulfillment with a job well
done, but I change people's lives in what I do."

A School Like No Other

From its creation in 1899 as The Home For Incurable Children, Bloorview
has evolved into a facility that serves 6,500 disabled children a year.
It houses a staggering array of specialists and services, offering
everything from therapeutic swimming lessons to computerized
communication devices to a medical clinic. It even has its own school.

Eighty kids, aged four to seven, get up each morning and take the bus to
Bloorview.

"This is a school first and then it's a special school second-in the
same way that our kids are children first and students first and then
they're students with special needs second," says Principal Linda
LaRocque.

It's a public school, but space is limited to those who can benefit most
from Bloorview's intense and focused care.

"Many of our children have cerebral palsy, some have spina bifida, some
are here because they have had a post-birth trauma, they've had a stroke
(or) they've suffered a brain injury that's affected their mobility,"
explains LaRocque.

With students with an array of disabilities, desires and dreams, the
common goal is to help each child reach beyond his or her physical
limitations. This includes preparing students to draw on their
abilities, so they can graduate from Bloorview and thrive.

"There are many ways to prepare for inclusion, and this is one of them,"
says LaRocque. "And that is to say that a segregated, self-contained
program as a preparatory school . is really important for some kids if
they're going to be truly included in a community school down the road -
and in life down the road."

Steps toward success

Four-year-old Harrison Barberian, or Harry, is in his first year at
Bloorview. He was born 10 weeks premature, weighing only 1,600 grams. It
was not until a year later that his mother learned Harry's diagnosis
from their doctor.

"He said to us, 'Of course you realize your son has cerebral palsy.'
Well, we hadn't realized that at all," recalls Harry's mom, Linda
Rodeck. "He had been a premature baby and we were told that he was
developmentally delayed due to his prematurity. So, it was like a cannon
ball being shot at us."

She and Harry's dad, Aaron Barberian, had to reevaluate their lives then
and there. They were told it was highly unlikely Harry would walk. They
faced a difficult time; that is, until they found Bloorview.

"The sense of relief you get when you walk through those main doors at
Bloorview is really almost palpable as a parent. You get a sense of
finally belonging somewhere," says Rodeck.

Because of the cerebral palsy, Harry relies on a wheelchair or walker to
get around. He has trouble with his flexibility and balance, even when
sitting. This is where Bloorview's Dr. Darcy Fehlings comes in.

Fehlings is an expert in the use of pediatric Botox treatments. She
treats Harry every six months or so with injections. The Botox works by
relaxing the muscles in his legs and, paired with stretching, allows
Harry better mobility and strength. Dr. Fehlings administers Harry's
treatment at The Hospital for Sick Children, an affiliate of Bloorview.

It's a painful procedure, but one week after his 12 to 20 injections,
Harry's therapists see marked improvement in his gait. In fact, he's
almost ready to walk with canes.

"If I look back at those original dark days, as we called them,
absolutely he's superceded my wildest imagination of what he could
achieve," says Harry's mom.

"It's entirely due to his time here. I've no doubt about that."

One Swallow at a Time

Harry's family is not the only one that relies on Bloorview to help
fulfill dreams.

Six-year-old student Deane Daprato was also born premature and later
diagnosed with cerebral palsy, but he and his family have their own
unique set of trials and goals. Deane is non-verbal, which means he
communicates with various tools, including a computer, gestures and a
complex system of symbols, customized by Bloorview staff. Deane's mom,
Ijeoma Ross, lists the array of people at Bloorview who support her son
directly:

"His teacher, the principal of the school, his physiotherapist, his
occupational therapist, speech therapist, somebody from the writing and
communication aids department . and the school psychologist."

One of the toughest things Ijeoma and her husband, Mark Daprato, first
learned about Deane's condition was that mealtime could potentially be
dangerous.

"If something goes down the wrong way, we start to cough and choke and
it's quite dramatic. But for a lot of kids who have what they call an
uncoordinated swallow, they can take liquids down into their lungs
without making a sound," explains Ross.

Swallowing food or drink into the lungs is called aspirating, which if
undetected or left unchecked, can lead to infections, pneumonia, and in
the worst cases, even death. Thankfully, Bloorview is home to one
brilliant mind who can translate this terrifying daily reality into a
scientific solution.

The Resident Innovator

The man who put Deane's problem under the microscope is Tom Chau, an
award-winning specialist in pediatric rehabilitation engineering. Chau
and his team of graduate students from the University of Toronto
developed a prototype sensor that detects slight differences in
vibrations caused by a child's swallow.

"The vibrations get picked up and get sent to (a computerized box). And
this box, first of all, amplifies the signal so. we can analyze it. And
then the box has a micro controller - so it's like a computer inside
that tears apart the signal and then decides what it's found, whether
it's found a swallow or an aspiration."

The device, dubbed the aspirometer, translates this information to a
parent or caregiver. A green light means a good swallow and a red light
means there's a problem.

"It's nice to know just to see the green light going on that he's doing
fine," says Deane's mom.

Chau left a high-paying engineering job at IBM five years ago, to come
to Bloorview.

"To me, this is personally more meaningful, in the sense that I get to
witness. the impact our work has. on the lives of kids and their
families," says Chau.

He recently received a prestigious Canada Research Chair, awarded only
to the country's top scientific minds. But Chau has no interest in
resting on his laurels.

He and his team of applied science graduate students have more
inventions to perfect. And as an incubator for new ideas in pediatric
rehabilitation engineering, the lab also benefits from being under the
same roof as the Bloorview students.

As part of a research trial, students from Paul Alcamo's kindergarten
class have come down to try their hand at a new device under development
that students call the "magic pen." It has sensors in it that measure
how tightly a child is holding the pen, while the computer screen he or
she writes on measures how much pressure is being exerted.

The data generated by this device will help teachers and therapists
evaluate a child's writing skills and assess his or her physical ability
to control a pen or pencil. This will help decide the method of
communicating that might suit that child best. If writing is not an
option, staff will channel the child's efforts into learning other
skills, such as communicating using a computer.

Chau has also developed a complex prosthesis that "listens" to the
sounds muscles make when a child moves his or her arm, and sends
messages to the prosthetic hand to respond accordingly. He hopes that,
someday, this will allow a whole host of disabled children to function
better in their surroundings.

"I think it opens up a lot of doors," he says.

Building Towards the Future

One of Chau's inventions that is already in wider use is a device that
opens doors to the world of music. With only a laptop, a Web camera and
a big-screen television, Chau's creation can make a musician out of just
about anyone.

The "virtual musical instrument" allows seven-year-old Sydney
Mills-Cooper to take music lessons every week, even though she has
spinal muscular atrophy. The disease leaves her muscles too weak to play
most conventional instruments, but she has no shortage of talent with
the VMI.

From a seated position in her wheelchair, Sydney faces a large
television screen with a Web cam on top, pointed at her. What she sees
on the screen is herself, with large coloured dots superimposed on the
space around her. Each dot represents a different musical note, so when
Sydney raises her arm to pass through a virtual dot, the computer plays
the appropriate note.

The VMI allows her to express herself creatively. Sydney's dad, Jonathan
Cooper, says moving her arms to create the music has also greatly
improved her arm strength and mobility.

"What we're proving is that every child has a right to musical
achievement," says Sydney's music teacher, Andrea Lamont.

Providing access to achievement and finding creative ways to enable
success in children with physical limitations is a fundamental goal that
Chau and Bloorview share.

"I believe, personally, that with modern-day technology, with the mix of
experts like what we have at Bloorview MacMillan, there is no condition
that we cannot improve in terms of quality of life," says Chau.

He says that seeing children benefit from the inventions he and his team
have created is his greatest reward.

"It's extremely gratifying, extremely fulfilling - and there's nothing
that can compare to that."




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