He may be gone, but his memory lives on forever.
Lewiston Olstad was just five months old when he died in his parents' arms in November 2016. The little boy was diagnosed with spinal muscle atrophy (SMA), a rare genetic disorder that causes nerve cells in the lower part of the brain and spinal cord to deteriorate and die.
This Saturday marks what would have been Lewiston’s third birthday. It’s a special day for his parents, who still celebrate the 172 days he was alive.
“He was like an angel,” said Jessica Olstad, Lewiston’s mom.
“There was something about his big blue eyes that made you want to connect with his soul.”
It’s a connection that resonated not only with Lewiston’s immediate family but with the hundreds of Calgarians who will gather on his birthday for an SMA fundraiser.
Jessica and her husband, Ronnie, created the Love For Lewiston Foundation in 2017 to honour their son. Each year, they mark his special day by raising money for treatment options and SMA research. So far, the foundation has raised $386,000.
The foundation's goal is to raise more than $400,000 this year.
It’s especially impactful for people living with the rare genetic disorder.
Shailynn Taylor was diagnosed with Type 2 SMA in 1997, when she was just 18 months old. At the time of her diagnosis, doctors said she wouldn’t live beyond the age of 12.
“I’m now 23-years-old and healthy and have a career and a degree, and it’s all because of this community and the work this community does to make treatments and opportunities available,” she said.
Taylor, who has been in a wheelchair since she was six years old, says mobility and the expensive costs of her disorder are a challenge.
Just last year, she fundraised $120,000 for a service dog and another $240,000 to access four doses of a treatment drug called Spinraza.
The drug, used to treat children and adults with SMA, was first tested on Lewiston as a way to pave the way for others.
Taylor is now one of two people in Canada currently using the treatment. As a board member with the Love For Lewiston Foundation, she hopes others can gain access to treatments faster and more inexpensively.
“Knowing my struggles every day and my fight to be independent and healthy, being able to help other people not have to fight so hard is the most rewarding this in the world for me,” she said.
The Love For Lewiston Foundation has been working with the Alberta Children’s Hospital for the last two years to launch a newborn SMA screening pilot project.
Jessica says half of the project’s $500,000 price tag is funded by Love For Lewiston. The screening will take place in Calgary and Edmonton over the next three years.
“It just means that every child born in a hospital will get screened and from that if they determine they have SMA they’ll be able to get treatment right away,” Jessica said.
“What’s critical and so important with that is that the sooner you get treatment, the outcome totally changes, so a little boy in Ontario got treatment a month-and-a-half before my son and he’s still alive, which is amazing.”
Lewiston’s third birthday party will be celebrated at Rodney’s Oyster House at 355 10 Ave S.W. Doors open at 7 p.m. with tickets available online at loveforlewiston.ca.
