Braelynn Bodman is two and a half years old. For the first six months of her life, she seemed to everyone who knew her to be a healthy baby.
That’s when everything changed.
“At the age of six months we noticed she could no longer bear weight on her legs,” says her mother, Maylia Bodman. “At ten months old, she still wasn’t crawling, getting into a sitting position, or making any attempt to pull herself to standing.”
Then, when Braelynn was fourteen months old, she was diagnosed with spinal muscular atrophy (SMA), a rare genetic neuromuscular disease that is similar to ALS, except it most often occurs in children.
The disease is degenerative and it affects a child’s ability to use their muscles for sitting, standing, walking, breathing, eating, and swallowing. Those with the most severe form, type-1, almost always die before the age of two. Braelynn was diagnosed with type-2.
“Braelynn has never been able to stand or walk, has lost her ability to roll, has lost her ability to raise her arms above her shoulders, and is losing the ability to hold her head up,” says Bodman. “She is fully dependent on us for all aspects of daily care.”
In addition, Braelynn has a small army of professionals overseeing her, including a neurologist, a feeding paediatrician, a respirologist, a respiratory therapist, an ENT physician, physiotherapists, and occupational therapists. Bodman adds that an orthopaedic surgeon will eventually need to join the team.
“Having a child with SMA is incredibly stressful emotionally and financially,” Bodman says. “We often have to fight for what Braelynn needs. We also faced needing to get a wheelchair-accessible vehicle before she would be able to get a power wheelchair—these vehicles run about $50,000—and we would also need to move to a home that could be made power-wheelchair-accessible. Our current bi-level home cannot be made accessible.”
The good news is that the family has already received a brand-new wheelchair-accessible vehicle from the Variety Club of Manitoba. But the Bodmans will still need to move to a different home.
“Another part of our story is that the first-ever treatment for SMA, a drug called Spinraza, was approved by Health Canada on June 30, 2017,” she says. “However, it costs approximately $750,000 the first year and $350,000 every year after. Since it was approved, we have been fighting tirelessly for the provincial government to fund it, but it is still under review and we haven’t been able to access it. There is no timeline for when these reviews may be completed. It has already been over a year, and SMA doesn’t wait.”
An even more promising treatment is now on the horizon, but it requires the Bodmans to stay in Chicago for two and a half months as part of a clinical trial. That’s where the family is living right now.
“We didn’t know how we were going to be away for that long without any income, because we both had to temporarily leave our jobs,” Bodman says.
Masters Donation
Every year, a group of local golfers gathers for a weekend in August for a battle royale tournament they call The Masters. They also use the occasion to raise money for a local family in need. This year, the 36 players raised $6,670 for Maylia and Ryan Bodman. In total, they have raised $41,000 for various families and charities.
“Being this year’s recipients of the Niverville Masters Golf Tournament fundraiser made it possible for us to be part of this trial and get Braelynn the treatment she needs,” says Maylia Bodman. “This treatment will hopefully stop the progression of SMA and may even make Braelynn stronger. We are so grateful to everyone involved in supporting the Niverville Masters and helping us to be able to do this for Braelynn. We will never be able to put into words what this means to our family and for Braelynn’s future.”
As for the tournament itself, it was held at Hecla Resort & Golf Course. In Saturday’s annual Ryder Cup event, the field is split into two teams—Team Red and Team Blue. Team Red won the day by a score of 16–11, after having lost the previous three years.
Steve Fast won the tournament on Sunday, receiving his first green jacket after 16 years of participation, having shot a round of 78. Runner-ups were Stan Hiebert (82) and Travis Mason (84). Bryan Trottier won the gold jacket for his low net score, after handicaps, of 72.
“The event is all about good competition, and a lot of fun for all levels of golfer,” says Ray Dowse, one of the tournament’s organizers. “But it’s also about being able to give back to local families that could use some financial support for different needs. We are currently looking for other local families who we could consider for next year.”
