how i care for spinal muscular atrophy: go out and experience the world – just like everybody else
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“probably the most important part about my childhood is that my parents really raised me like a normal kid," jeremy bray, pictured as a child, said of growing up with spinal muscular atrophy.
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sometimes, it’s people with the greatest challenges who are the most determined individuals. they don’t quit or give up on what they want to do with their lives.
jeremy bray is one of them. the 29-year-old in rivers, man. gets things accomplished with the strength of his left thumb. he can control his electric wheelchair with it and do his job remotely as a data consultant with a school division. he uses an app on his phone as a mouse for his onscreen keyboard.
“it works really well,” he says of his accessible devices. “i work with student data to represent data visually in different ways so superintendents can see performance and attendance levels across the division between schools. my degree is in computer science so i can write code to summarize data.”
living with spinal muscular atrophy (sma)
jeremy was born with spinal muscular atrophy, or sma, a genetic disease where muscles throughout the body are weakened because nerve cells in the spinal cord and brainstem don’t work as they should. the neuromuscular disease is progressive, so muscle weakness and loss of function get progressively worse. type 1 is the most severe form when symptoms begin at birth or within the first six months and many children don’t live past age two. jeremy has type 2, an intermediary form with symptoms developing between six and 18 months. early on, he could sit and stand up, but he never walked.
depending on the severity of symptoms, like trouble breathing, feeding and swallowing because of associated muscle loss, people with type 2 may have a normal lifespan. things like sensation and the ability to feel are not affected, and intellectual activity is normal. people with sma tend to be very smart and sociable, according to cure sma canada, a national support and advocacy organization. it’s considered a relatively common “rare disorder” with about one in 6,000 babies born with sma, and one in 40 people are genetic carriers.
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a childhood filled with normalcy and adventure
while jeremy doesn’t live a typical life or have an easy time of things, he credits his parents for giving him a regular childhood and just letting him enjoy being a kid.
“probably the most important part about my childhood is that my parents really raised me like a normal kid. they didn’t shelter me anymore than they did my sister. they let me run around town with my friends doing all kinds of crazy stuff that kids like to do,” he laughs and mentions his first little red wheelchair at about age two and then driving around the gymnasium to practice in his first electric wheelchair when he was four. “i was flying around that gym, it was pretty exciting,” he recalls. “so i think that’s a really important part of being a kid and being a normal human to experience things.”
he sums up his advice to other parents of people with sma as simply: “you never want to protect them too much. don’t hide them, let them go out there and live their life.”
the caregiver journey: strength, support and advocacy
what has the caregiver journey been like for his parents? unexpected, but rewarding in so many ways.
darren and tara bray were in their early 20s when they had jeremy, who is a year-and-a-half younger than his sister jena. he was a happy little guy, content to sit and play with his superhero figurines on the floor. but at his 12-month checkup, the pediatrician had concerns about his muscle tone and suspected sma. he was referred to a pediatric neurologist in winnipeg.
“so as parents, right away we were on the internet. even back then in 1995, we’re searching ‘what is sma?,’” darren says of the initial fear and uncertainty. “what’s available now to parents compared to what was available then is quite a change. the information was vague and the outcome that was talked about was not good.”
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confirmation of his diagnosis from the neurologist also came with the news that jeremy will have a tough time living past the age of five.
“we went from shock to heartbroken and scared,” he says. they were a close-knit family and felt the big challenge was telling their parents.
as tara recalls, “i remember feeling panicked, but then deciding, ‘okay, we’re going to keep it together. we’re not going to make that big of a deal. we’re going to accept it and do all that we can.”
as caregivers and parents, darren and tara bray, back left and right, were never shy about speaking up. they helped get an educational assistant for jeremy, middle, at school and an elevator installed for his wheelchair.
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so they did, making some significant lifestyle changes that would support jeremy’s needs. darren works for manitoba hydro and tara is a registered nurse, so both had solid careers and health coverage. they were living in brandon but decided to move a half-hour drive away to their hometown of rivers, a community of just 1,200 people, where everyone knows each other, and the schools are small. “we felt that this was a better environment to bring jeremy up in and we knew we were going to build a new house that was totally accessible for him and wheelchair-friendly,” darren adds.
they also had a tremendous support system of family and friends in the area, which they both recognize makes a difference, whether they’re knowledgeable about sma or not. “you really need your family or friends or people that can help support you in this whole process,” he notes. “we’ve had occupational therapists and physiotherapists and resources like respite and things like that, you need all of that. people really need to research that kind of thing. you need all the support you can get.”
darren also knows the value and power of self-advocating to make things better. he took the initiative to help his family and others managing a diagnosis of sma in canada by exploring and learning as much as he could about the disease. he drove to the annual sma conference in denver through the u.s. non-profit cure sma where he met other families and saw other kids with the type 2 diagnosis that were much older than jeremy and were doing fine.
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at the time, he notes there was a lot more awareness and research underway for sma in the u.s. than canada. the experience spurred him to establish the charity cure sma canada from his home, working with families across the country for fundraising for research. he dedicated time to the charity for seven years and is thrilled to see that it has also become a key support organization for patients and their families. “i just felt like there was something that had to be done, so i started the ball rolling,” he says.
“everybody deals with [sma] differently. some want to connect with families right away, but some find it very difficult to do that. but once you’re put in touch with other families who are going through the same thing, it’s a wonderful thing and they can provide that support.”
as caregivers and parents, darren and tara were never shy about speaking up. they helped get an educational assistant for jeremy at school and an elevator installed for his wheelchair. drug therapy advanced over the years in terms of treatment and they have helped jeremy connect with government funding and disability services. he went to brandon university with a support person who would take notes for him and take his dictation of answers for exams. now jeremy hires and manages his own support staff for personal care at home.
the next hurdle is getting access to start a new medication that will help maintain the function of his left thumb – which gives him the ability to make a living and connect with the world. while the drug is available in other parts of canada, each province has its own regulatory framework for drug coverage and access. cure sma canada representatives, jeremy’s neurologist and his family are making a case to lobby for special access.
“for jeremy, it’s probably this drug that’s it for us, for maintaining what he has. we need to maintain that strength he has in his thumb, because once he loses that, then he loses all his independence, his ability to work, communicate by email and, and get access to that outside world,” darren explains. “it’s challenging for him to do without that. it would be a setback. we’re really trying to get access to something that will help maintain that.”
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facing challenges and celebrating achievements
to say that things get easier as you go along with sma wouldn’t be true, but there’s a shift to appreciating things and looking at the world in a different way. the brays agree that that’s a huge positive.
tara’s words about being a parent of someone with sma are honest and stirringly heartfelt:
“first getting that news is dreadful. but just knowing that these kids offer such a special perspective changes you. they’re always very inspiring,” she says.
“it’s not maybe the life you had thought you were going to be living, but it’s a much better life that we live now. we appreciate the little things a lot more. i remember in the beginning saying, ‘darren, i’m really sad for you that you’re never going to have your little buddy who’s going play hockey or play ball.’ but jeremy’s given us so much more with other things in this life. he’s opened us up to lots of different experiences. there is more out there that is so much more important than a little league baseball team.”
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