By Joel van der Veen
DAVIDSON — The people of Saskatchewan have a reputation for generosity and kindness, and over the last four months, Cheryl Black says she’s seen more than enough proof to convince her.
Residents across the province have rallied in support of her son, his wife and their twin infant daughters, who were diagnosed with a fatal genetic condition at four months of age.
Since that diagnosis in June, upwards of $37,000 has been raised to support the family as they have migrated to British Columbia, where the girls are undergoing an experimental treatment.
“You know for sure when something like this happens,” said Black on Thursday. “They’re living off the love of this province, literally.”
Her son Dan Surine and his wife Melissa, who live in Saskatoon, became the proud parents of Addison and Emma on Feb. 2. The girls appeared healthy until later that spring.
In mid-May, the Surine family was visiting Davidson, where Black lives and is employed at the health centre as head housekeeper.
They were attending the graduation exercises at Davidson School — where Black’s sister, Cathy Rettger, is vice-principal — but had to leave early as Emma had fallen ill.
By early June, Emma had been diagnosed with Type 1 spinal muscular atrophy (SMA), a genetic disease that causes the loss of nerves within the spinal cord, as well as weakness with the corresponding muscles.
The disease affects the ability to walk, stand, sit, eat, breathe or swallow. It is the No. 1 genetic killer of infants and young children.
About one in 6,000 babies are affected by SMA, and it is typically fatal before the age of two. There is no known cure.
Genetic testing revealed that Addison is also affected by SMA, dealing a devastating blow to the family.
Despite the heartbreaking news, the Surines were quickly contacted by Families of SMA Canada, leading to them attending a conference in Kansas City, Missouri, and learning about a drug trial for which the girls would be eligible.
To take part, the family had to move from Saskatoon to British Columbia for 14 months, with Dan and Melissa leaving their home, jobs and lives behind in August.
Since this summer, family, friends and even strangers have stepped up to support the family, organizing a series of fundraisers to cover the costs involved, beginning with a GoFundMe account to pay for the family’s trip to Kansas City.
The Surines’ neighbours hosted a steak night and silent auction in August, while Anne Willner donated the proceeds from a Civic Holiday charity breakfast at Douglas Provincial Park to the cause.
Rettger’s friend Kelly Forsberg, a former Saskatchewan Roughriders employee now working as an event planner, organized a fundraiser at Saskatoon’s Rock Creek Tap and Grill on Aug. 30 with the help of Darian Durant.
Fans could get autographs signed or bid on a seat at the quaterback’s table to watch the day’s game. Silent auctions were also held; among the items up for bids was a round of golf with Rob Bagg and Weston Dressler, which eventually went for $3,500.
Bagg and Dressler came to the Harbor Golf Club and Resort in Elbow to make good on the deal, enjoying an afternoon game of golf, having supper and drinks, and signing autographs for fans.
The donations and support have been greatly appreciated by the Surines, who are now providing round-the-clock care for their daughters. Melissa’s background in nursing has proven helpful.
Emma’s SMA has progressed quickly; at three months she had nearly lost the ability to swallow, and now she depends on suction to remove the saliva from her mouth.
The girls are undergoing a series of six injections, with the fourth expected in late October. Due to the nature of drug trials, Dan and Melissa don’t know whether the girls are receiving a standard or double dose, or simply a placebo.
Rettger said they are seeing some improvement since the treatment began with increased movement in the girls’ arms and legs, but Addison has since lost the ability to swallow.
Black said she visited the family in Kelowna most recently in early October. In addition to the donations, she said they’ve also appreciated the support of the SMA community.
The whole experience has been overwhelming, she said, adding, “It’s hard to express how grateful you can be . . . It has been lovely.”
Rettger added that despite their exhaustion, Dan and Melissa are determined to “celebrate every day with the girls.”
“They are relentlessly positive,” she said. “They just seem to take each new thing in stride.”
To donate, visit gofundme.com/ypx7yv4.