Angel lives with disease, seeks cure

By Geoff Lee

February 11, 2016 8:43 AM

Grade 5 student Ty Fleming, who has Angelman Syndrome, gets a helping hand with his symbol-based speaking app from Pam Brousseau, an educational assistant at St. Joseph Elementary School.

Kent Fleming hopes to put the spotlight on a need for better diagnosis, and research funding into a cure for Angelman Syndrome.
The rare neurogenetic disorder his 10-year-old son Ty was born with will be in the limelight on International Angelman awareness day Monday.
“One of the main challenges is getting a diagnosis because it’s so rare,” said Fleming.
“It took us until Ty was three years old and still wasn’t walking and meeting goals.”
Ironically it was a story in the Source about a man cycling across Western Canada to raise awareness of his daughter’s AS that tipped the family off.
“We read that article and we were able to correlate all the symptoms and then we were able to get a diagnosis for our son,” said Fleming.
AS occurs in about one in 20,000 people and affects chromosome 15, resulting in intellectual and developmental delay with a tendency toward jerky movement often misdiagnosed as cerebral palsy.
Fleming says common symptoms are a love of water and frequent laughter.
“They are quite happy, but also on the bad side is epileptic seizures and loss of balance.”
International Angelman day aims to raise worldwide awareness of the condition along with funding
for research and educational resources.
“The day promotes research because we do have a way of controlling the gene or modifying the gene through genetic research in mice,” said Fleming.
He said prior to reading about AS in the newspaper he and his wife were going from doctor to doctor every week to try to figure out what it was.
“Of course you don’t get funding until you figure out what your diagnosis is, and you don’t get proper treatment either,” he said.
“We know of three (children with AS) in Lloydminster, but there could be some older ones who are misdiagnosed with cerebral palsy or something else.”
Fleming said International AS day is also about raising funds to educate people about medications for seizures and therapies on how to control it.
As the owner of K and H Fleming Contractors that builds houses in Lloydminster, Fleming said he can afford basic treatments for his son, but it’s not cheap.
Many of those diagnosed with AS need a wheelchair and most can’t speak.
Like most people with AS, Ty communicates via an augmentative, assistive communication (AAC) device,  which can be costly.
Ty uses a symbol-based speaking app called Proloquo2Go, specially made for an iPad.
The app costs about $300 with another $100 or so for an unbreakable iPad case.
Fleming said some people also need funding for wheelchairs or special aids in their house or devices to keep their kids locked out of dangerous areas of their houses.
“A lot of modifications are needed to raise an Angel,” he said.
Fleming noted his son Ty doesn’t have seizures or need a wheelchair, but he definitely walks with a jerky gait.
“He looks like he has a mild case of cerebral palsy,” he said.
“He does get tired quicker — we do have a special needs stroller for him.”
Fleming notes Ty’s love of water means he’s drawn to splash and play in lakes and rivers.
“He’s learning to swim,” said Fleming.“He can keep his balance with a life jacket on now. “
Fleming said he’s also taught Ty how to skate.
“Now if I just hold his hands he can actually just glide along so it’s pretty neat,” he said.
Fleming said Ty is fully included at St. Joseph’s School, but he needs a full care aid at all times and probably will the rest of his life unless there’s a cure found.
He invites parents, teachers and caregivers to attend the Canadian Angelman Syndrome Society International Conference in Edmonton July 13-16 at the Double Tree hotel.
“Researchers and genetics scientists on Angelman will be there for a three day conference so people can learn and meet people in the same situation as them,” said Fleming.

More News

LCSD hosts archbishop

The Lloydminster Catholic School Division (LCSD) had a special guest this week, as Archbishop Richard Smith toured multiple schools. more »

Falk talks first session in House of Commons

Battlefords-Lloydminster member of Parliament Rosemarie Falk is back in her constituency for the summer. She held a summer office open house this week for people to have a tour, drop by for a conversation,… more »

Health council opens channels

We have your back on healthcare. That’s what the Yellowhead East Health Advisory Council (HAC) told local and area residents during its latest meeting at the Lloydminster Hospital on June 20. more »

more »