The impact a Winnipeg study has had on a family from Ireland 13 years later
A treatment for an infantile severe bone disease that was tested in Winnipeg is proving to be life-changing 13 years later.
In 2008, CTV News first introduced you to Amy Tinsely, she was 9 months old at the time.
She and her mother Leanne, left Belfast, Ireland in a hurry to come to Winnipeg on the chance the little girl's life could be saved.
At the time, a groundbreaking clinical trial was happening at the HSC Winnipeg’s Children's Hospital. It was testing a new drug for a severe type of rickets Amy was born with, called hypophosphotasia—which there was no treatment for.
When she was born, her bones were so soft she couldn't be hugged and many children with the condition didn't live past two.
"To have Amy here today at 13-years-old, from being told she would never see her first birthday, is phenomenal," said Leanne.
Today, Amy said she loves baking and school, although she does need some assistance to get around the school’s hallways.
"So that I don't fall over and get squashed in the crowds," Amy said via video conference from Belfast on Monday.
Amy doesn’t have any memory of her time in Winnipeg, but Mom distinctly remembers the day Amy’s doctors in Ireland found a clinical trial in Winnipeg.
"Within about three hours our geneticist comes busting through the door saying he found this clinical trial starting in Canada (and) would we be interested,” she said. “So, these things don't happen by chance."
The study was testing a new drug called ENB-0040 which had the potential to save Amy’s life. HSC Winnipeg’s Children's Hospital was the first site in the world to test the treatment, and Amy was the first infant to get it.
"We brought many children after Amy to Winnipeg for the clinical trials," said Dr. Cheryl Rockman-Greenberg, clinician scientist at HSC Winnipeg Children’s Hospital and CHRIM.
Rockman-Greenberg says the trial ended in 2016 and in 2019 the enzyme replacement was Health Canada approved. She said it is now covered for eligible patients through most province’s drug formularies and she expects new treatments to come.
"This will all look different in 10 years from now," Rockman-Greenberg said.
By then Amy will be 23 and she already knows what she wants to do to with her now bright future.
“I would like to be a nurse when I am older, a children's nurse," said Amy.
Amy and her family were in Winnipeg for a total 22 weeks back in 2008 and they headed back home to Belfast once the treatment was available there.
Hypophosphotasia worldwide is about 1 in 100,000 but in some population groups it can be higher.
In Winnipeg Rockman-Greenberg said doctors see about one new severe case per year since it is more prevalent in the Mennonite community.
CTVNews.ca Top Stories
Spectacular aurora light show to be seen across Canada Friday night
A rare and severe solar storm is expected to bring spectacular displays of the northern lights, also known as aurora borealis, across much of Canada and parts of the United States on Friday night.
Town of Fort Nelson, B.C., ordered to evacuate due to wildfire
The entire town of Fort Nelson, B.C., as well as the nearby Fort Nelson First Nation, has been ordered to evacuate due to an out-of-control wildfire.
Snowbirds in Vancouver for puck-drop flyby as Canucks face Oilers
The Canadian Forces Snowbirds will be performing a flyover across downtown Vancouver at the start of tonight's Stanley Cup playoff game between the Canucks and the Edmonton Oilers.
McGill University seeks emergency injunction to dismantle pro-Palestinian encampment
McGill University has filed a request for an injunction to have the pro-Palestinian encampment removed from its campus.
Which Canadian cities have the highest and lowest grocery prices?
Where you live plays a big factor in what you pay at the grocery store. And while it's no secret the same item may have a different price depending on the store, city or province, we wanted to see just how big the differences are, and why.
Swarm of 20,000 bees gather around woman’s car west of Toronto
A swarm of roughly 20,000 bees gathered around a woman’s car in the parking lot of Burlington Centre.
Video shows naked raccoon catching B.C. family by surprise
When Marvin Henschel spotted a strange and hairless creature wandering through a front lawn in B.C.'s Lower Mainland, he could barely believe his eyes.
Barron Trump declines to serve as an RNC delegate
Former U.S. President Donald Trump's youngest son, Barron Trump, has declined to serve as a delegate at this summer’s Republican National Convention, according to a senior Trump campaign adviser and a statement from Melania Trump's office.
Out-of-control wildfire prompts evacuation alert for Fort McMurray, Saprae Creek Estates Friday night
An evacuation alert was issued for two Wood Buffalo communities Friday night, as crews battled an out-of-control wildfire near Fort McMurray.