Ottawa boy’s rare genetic disease has his community fundraising for a cure

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“Sharing stories is how we can reach out to people and have help from others and not be so alone,” said Anna. “When you have a rare disease, you can feel alone and really isolated.”

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Since then, support from the community has only kept skyrocketing. For the Laidlaws, the love from their friends and family has “meant everything” to them.

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“It’s the community that’s really rallying around us and lifting us up and helping us to keep going through all of this,” Anna said.

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“When one person asks or gives you a little pat on the back, it helps,” said Richard. “We appreciate all the comments, the support, the hugs from our community. It’s been what’s helping us get through a lot.”

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Among the most recent community efforts was a week-long lemonade stand run by Jack’s friend, Liam Liu. This was the second year in a row that Liam sold cups of lemonade to help raise money for his friend’s cure.

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“Liam and Jack, they’re good buddies,” said Richard. “They’re a great family.”

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Following last year’s success of raising more than $3,700, this year’s goal was to raise $5,000 — but the final number doubled their target.

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“They raised over $10,000,” Richard said. “It’s awesome. People care.”

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Ahead of last year’s lemonade stand, Liu’s family put together a video introducing Liam and his initiative.

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“I’m selling lemonade because my friend Jack has SPG4, and I need to raise money for his cure,” said seven-year-old Liam in the video. “We need your support.”

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To continue to spread the word this year, Liam’s parents posted videos online of the lemonade stand throughout the week, highlighting the amount of money raised each day. By the end, they had raised $10,305.

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“This is not only a story about friendship, but also a powerful story of unity within a human community,” wrote Liam’s father, Yan Liu, in the caption of their final video for this year’s stand.

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Richard said, in addition to family, friends and neighbours, various local celebrities also paid the stand a visit, including Jake Sanderson and Michael Amadio of the Ottawa Senators. They also got a visit from Councillor Glen Gower, firefighters, first responders and nearby kids’ sports teams.

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To top it all off, local band Caribou Road further enlivened the lemonade stand on its last day.

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“They offered and jumped on to help with it,” said Anna. “They were amazing. Amazing people and amazing music.”

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“Everyday a magical thing happened,” Richard added.

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During that same week, the Laidlaw family got the chance to hear the Artemis II astronauts speak at the Canadian Museum of Nature, thanks to an invitation from Space Canada.

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“Our children were the only children there,” said Anna. “We got to sit in the front row and listen to the astronauts.”

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During the event’s question period, words from Jack appeared on the screen.

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“It was just the most special moment,” Anna said. “His question was, ‘Hi Artemis II crew, my name is Jack, I’m 9 years old and I want to be an astronaut — What can I do to make that dream come true?’”

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“He couldn’t believe they were answering his question. That was a really inspiring moment.”

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Jack said it felt good getting his question chosen, recalling the astronauts’ answer:

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“They said, ‘Do things that you’re scared of.’”

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Anna and Richard said between the doctor’s appointments, physio and massage therapy, it’s the happy moments in between that “make all the difference.”