When you live with a progressive neuromuscular disease like spinal muscular atrophy (SMA), timely access to treatment is critical to retaining strength and ability.
Jared Wayland and Sydney Dick of St. Catharines, Ont. have been looking forward to the birth of their first baby, who entered the world in early January. Their hopes and dreams are typical of many first-time parents — that their child grows up to be happy, healthy, and loved.
But Jared and Sydney are not typical parents. Jared, 33, lives with SMA, a rare, genetic neuromuscular disease that has already robbed him of his ability to walk and continues to make him weaker with each passing day. SMA is characterized by loss of motor neurons in the spinal cord and lower brain stem, resulting in severe, progressive muscle atrophy and functional decline.
“I’m determined to live my life to the fullest, but the future is always uncertain for me and my family because of my SMA,” Jared says. “Sydney and I will have the same types of struggles as any other new parents, but sometimes I wonder, ‘will I even have the strength to hold my child a few years from now?’”
Simple day-to-day tasks a huge challenge
Jared lives with Type 3 SMA, a later-onset form of the disease. Prior to his diagnosis 20 years ago he was an active teenager, participating in hockey, baseball, swimming, and golf. But Jared began to notice it was getting harder to get up after falling and he was tripping a lot. “One day I was holding something, and my parents noticed my hands were shaking,” he says. A trip to the family doctor led to several neurologist visits and an eventual SMA diagnosis.
Although treatment for SMA was non-existent throughout his adolescence and early adulthood, therapies have since been approved in Canada. However, many adult patients, including Jared, are still waiting for access. With the exception of Quebec, where treatment is available for all adults, most provincial reimbursement guidelines permit access in exceptional situations, evaluated on a case-by-case basis.
An application for treatment reimbursement was made for Jared by his physician in August 2019. More than two years later it continues to be under evaluation, its outcome elusive and far from certain — a reality shared by the majority of adult patients outside Quebec who apply for access. Meanwhile precious time and muscle have been lost and Jared’s condition continues to decline. He now relies on a power wheelchair almost exclusively for mobility and counts on Sydney to help him with much of his care, from getting up in the morning to bathing and dressing.
“Treating my SMA as soon as possible is critical to ensuring I can help care for my child and be the father I’ve always dreamed of being. We know it’s a time-sensitive issue and that my SMA will continue to progress. Now with the baby here it only expedites the need,” says Jared. “Just being able to maintain what I still have would be great, but if I could go back to the level of ability I had just two years ago, that would be a big plus.”
Staying optimistic amid challenges and advocating for others
As Sydney’s due date approached, her ability to physically support Jared became increasingly limited. To provide support to his family, Jared invested in costly lifts that increase his independence and help him fulfill his caregiving goals. With the baby now here, the couple will face similar struggles as all new parents do, as well as change their care dynamic as attention shifts more to their child’s needs. “Fortunately, we have both sets of parents and siblings nearby to help, but we’re still figuring how things will play out. Access to treatment for Jared would be one less thing for us to worry about,” says Sydney.
Despite his challenges, Jared is optimistic and counts his blessings. He is excited to be a new father and says he is committed to raising his child in a home that sets an example for inclusiveness and understanding. He continues to have the use of his hands and is currently able to earn a successful living as a graphic designer. Over the past five years, Jared has also been cultivating a positive mindset and advocating for treatment access for all adults. “As important as this is to us, it’s a much wider issue. There are so many people out there who could benefit from treatment, and anything I can do to help is what I want to do,” he says.
This article was made possible with support from a research-based pharmaceutical company.