Stittsville parents Anna and Richard Laidlaw live every day with a growing sense of helplessness as a rare genetic disease slowly robs their seven-year-old son Jack of his ability to walk.

The Grade 2 student of Holy Redeemer School has spastic paraplegia type 4 (SPG4) for which there is currently no cure and no medical research in Canada because so few people — less than 0.01 percent of the population — are affected.

Meanwhile, scientists are in the process of developing a treatment in the United States to stop the progression of the neurological disorder.

But first, the Laidlaws must help to raise $3 million US to bring the groundbreaking gene therapy to the clinical trial stage. “We didn’t know what else to do, so we just started fundraising,” said Anna during an interview with the couple to discuss their most ambitious effort to date: a charity gala.

Jack’s Gala: Reaching for the Stars is set to take place at the Brookstreet Hotel in Kanata on Saturday, May 24. The $200-a-ticket dinner will feature a keynote address by the first Canadian to go into space, Marc Garneau. He’s also a former Liberal cabinet minister.

Attendees will hear from well-known personalities Stu Schwartz and Derick Fage as live auctioneer and emcee, respectively. There will also be a DJ, silent auction and raffle.

Local musician Tyler Kealey of the Ottawa Dueling Pianos has generously offered to perform.

Numerous local businesses are stepping up, including Richard’s employer, multi-trade construction company Power-Tek Group, which is a major sponsor. Richard is an electrician there while Anna works as a policy analyst for the federal government. They’re both originally from Saskatchewan, and it shows — they’re down-to-earth, friendly and community-minded.

After a series of grassroots campaigns — including a Taylor Swift ticket auction that raised $40,000 last year — the Laidlaws decided to scale up their fundraising further with a gala. Because damage caused by their son’s gene mutation cannot be undone, time is of the essence. Jack was diagnosed with SPG4 right before Christmas 2023.

“When we were given the diagnosis by Jack’s neurologists at CHEO, we were told that he would become paralyzed from the waist down, and they did not know how long he had left to walk.

They told us that there was no treatment or cure, and that there was nothing we could do. We were told to go home and live day to day, enjoy each day, and not worry about the future.”

The Laidlaws say they just want to give their son the best possible chance at living a full life. “I’ve been reaching out to people as a desperate mother,” said Anna. “There are really wonderful people out there who are wanting to help.”

Premier event designer Sharon Bosley-House of Avant-Garde Designs will transform the hotel venue into a cosmic wonderland, in keeping with the outer space theme.

“Jack wants to be an astronaut and the first person to walk on Mars,” explained Anna, who had earlier reached out to the office of Garneau’s former riding, sharing her son’s story and their efforts to help him, and asked if Garneau would be willing to attend. “It was Marc Garneau who wrote me back, saying, ‘Of course, Anna. I would love to help you’.”

Jack and his two younger brothers, six-year-old Scott and three-year-old Tom, will be present for the cocktail reception portion of the night to meet Garneau and all of the guests coming out to support him.

Anna had contacted Space Canada, despite knowing nothing about the association at the time, to share her family’s story and ask for help. Not only are members attending the gala, but they’re loaning a space exhibit for the event.

Jack Laidlaw, who’s turning eight later this month, with his younger brothers,  Scott, six, and Tom, three. Photo by Caroline Phillips

The Laidlaws plan to raise awareness at the dinner over Jack’s condition and treatment option. He participates in daily physio to help manage his symptoms, such as muscle stiffness in his legs. “He’s the happiest, most positive boy; everyone loves Jack,” said Anna of her social, sports-loving son. “It’s just his gait; he walks differently than other children. It’s getting more and more difficult for him to walk over time. The disease makes it so everything takes more effort, even walking.”

The Laidlaws’ gala committee includes their friends Patrick and Jennifer Brennan; Anna’s parents, Ralph and Suzie Nilson (they’re both retired, esteemed health researchers living on Vancouver Island); and two students from Algonquin College’s event management program, Stefanie Burch and Gioia Morin.

Initially, the students became involved in Jack’s Gala as part of their program. Now, their participation is entirely volunteer. The students, who graduate this June, are committed to seeing the inaugural gala through to the end, working closely with the Laidlaws toward a successful event. “We’ve all become such good friends,” said Anna. “They’re kind of like a second family.”

Added Richard: “We have never done anything like this before, so to have someone in the event planning program has been amazing. We definitely lucked out with having the two best students in the program. We’re very blessed.

“It’s going to be an amazing night.”

From left, Anna Laidlaw, three-year-old son Tom, seven-year-old son Jack, six-year-old son Scott, Richard Laidlaw and graduating Algonquin College event management student Stefanie Burch, who has been voluntarily helping to plan Jack’s Gala: Reaching for the Stars at the Brookstreet Hotel on Saturday, May 24 to support research into a cure for Jack’s rare genetic condition, spastic paraplegia type 4 (SPG4). Photo by Caroline Phillips

Providing gala guidance have been Jeanine and Dean Otto, who recently hosted their 16th annual and largest charity gala to date in memory of their late daughter, Maddy, and in support of Roger Neilson Children’s Hospice.

The Laidlaws say they also owe a lot to fellow Canadian Terry Pirovolakis, who came up with the funding to have his son treated in a gene therapy clinical trial for SPG50, a different form of hereditary spastic paraplegia.

Pirovolakis was the one who advised the Laidlaws to create their own Go Fund Me page and to affiliate themselves with a Canadian charity such as the Blu Genes Foundation.

The Laidlaws are collaborating in their fundraising efforts with three other families and family foundations from the United States whose children are affected by SPG4. To date, about $400,000 US has been collectively donated to the researchers developing the SPG4 cure.

“Terry has been this beacon of hope for rare-disease parents,” said Anna, who, on the suggestion of Pirovolakis, created a compelling public appeal video with her husband to help people to understand Jack’s story. Filming it was far more emotional than expected. “During the first few takes, we just cried,” said Anna.

As well, Pirovolakis gave the Laidlaws their most important piece of advice, yet. “He said, ‘Never give up’.”

The Laidlaws have chosen to move forward in a positive way, one that involves fundraising for a cure. “That is how we can help Jack, and the only way we can help Jack. We will not stop and we will never give up until we reach that cure. If there was nothing — no cure in development, and nothing in the future to strive for to help Jack — I cannot say I would be moving forward in a positive way. It’s what keeps me going: hope.”

To purchase tickets to Jack’s Gala visit: https://spg4curefundraiser.wixsite.com/fundraising-event

Seven-year-old Jack Laidlaw, seen playing ball in his neighbourhood of Stittsville, suffers from a rare genetic condition that, without treatment, will eventually leave him paralyzed from the waist down. Photo by Caroline Phillips

This article is made possible through sponsorship from Star Motors, WCPD, Marilyn Wilson Dream Properties, ExecHealth, Infinity Convention Centre, Altis Recruitment, Bell Canada, First Avenue Investment Counsel and RBC.

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