Albertans from the two major cities have been engaging in a friendly fundraising battle to support toddler Max Sych, but the Edmonton team suffered a recent setback.
Edmonton and Calgary groups are competing in a bottle drive, the funds from which will support Max’s treatment.
Sych — or “Mighty Max” as he’s been called — has spinal muscular atrophy Type 2, a rare, progressive disorder that affects about one in 6,000 babies and causes muscles to waste away.
Generous Edmontonians have been dropping bottles off at various locations to help the cause, but at least six bags were stolen from one of the collection sites: Julie Thorson’s garage.
“I was just across the street getting my mail and I came into my driveway to take a picture of the bottles because I was going to send it to my niece to show her how many bottles we had in the driveway,” said Thorson, who’s a relative of Max.
“I heard a door slam out here, went to my front room window, thinking: ‘Someone’s bringing more bottles.’ But this little silver car started driving away real fast with a bunch of bags of bottles in it,” she said Friday.
“I was really upset. I thought: ‘Who would do such a thing? It’s taking money away from Max, from his treatment. It saddened me.”
In Canada, Max has access to Spinraza for treatment. The prescription drug could be given to Max for his entire life, and it can increase survival and motor function.
But his parents want him to have access to Zolgensma: a one-time dose that would replace the faulty gene at the root of the disorder. Studies show 91 per cent of patients who received the one-time infusion were still alive at 14 and 18 months, with no need for permanent breathing support.
Volunteers in Calgary have managed to raise more than $44,000 in their bottle drive for Max. Thorson said the Edmonton group wants to push ahead, try to make up the money lost in the theft and either match or beat the Calgary total.
Altogether, fundraisers for Mighty Max have raised about $850,000. Zolgensma costs $2.8 million.
“The bottle drives have been amazing,” said Chris Sych, Max’s uncle. “Huge community involvement, moving mountains of bottles for Max.
“Thank you so much to everybody — the community, people who are offering their time, their locations — it’s absolutely amazing. From the bottom of our hearts, the family appreciates all the support.”
While hearing about the bottles being stolen was hard, the family isn’t dwelling on it.
“The community support and love we’ve felt from so many totally outweighs this one act.
“I just feel bad. We have people donating their driveways and their time and something like could make them feel uneasy,” Chris said.
When asked if he had a message for the person who took the bottles, Chris took his time in responding.
“I really hope that person could really use that money. We’re going to look at the positives and try to move forward with this.”
Anyone interested in supporting the cause can drop off bottles at various locations in St. Albert and Edmonton, as well as participating bottle depots.
More details on drop-off locations and other fundraisers are posted on the MightyMaxSych.org website.
In addition, Tim Hortons locations in Valleyview and Peace River have created a Mighty Max donut with proceeds going to Max’s treatment.
Health Canada approved Zolgensma in mid-December.
At that time, Alberta government spokesperson Zoë Cooper told Global News the provinces were working together to negotiate a price for Zolgensma. Cooper said the province is “committed to providing access to children in Alberta who are eligible for this treatment.”
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Steve Buick, press secretary for Health Minister Tyler Shandro, said in December the minister hoped to see Zolgensma funded early in 2021.
“We’re asking anyone who can to write into their MLAs, the health minister Shandro, asking for not only for Max, but a few other kids with SMA, to receive a compassionate dose of Zolgensma before their negotiations or funding is figured out — because these kids would benefit greatly from getting this sooner than later,” Chris said.
“We’re all racing against the clock.”
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