Mason
The summer of 2021 was one of the most exciting yet challenging times our family has ever faced.
After a fairly routine pregnancy, aside from a lack of kick counts in the final weeks (with no red flags raised during follow-up), our son Mason finally arrived.
Although an emergency C-section was required, we felt a sense of calm—we had been in that situation before with our first. What we were not prepared for, however, was Mason’s profound hypotonia and absence of reflexes at birth.
Being delivered in a province that did not screen for SMA at the time, Mason underwent countless invasive tests before we finally received our answer one month later: a severe form of spinal muscular atrophy.
The highs and lows we have experienced since that diagnosis are all too familiar to this community - a community we never would have chosen, but one we now cannot imagine our lives without.
Mason has opened our eyes and the eyes of so many he meets to the importance of a more inclusive world. This outspoken kindergartener is proud of his wheelchair and never hesitates to make a new friend. He has taught us to find deep joy in the simple moments - moments others may see as small, but for a family once told their child may only live to see six months to two years, they mean everything.
It is also because of this community that we get to experience those moments. The families, advocates, and researchers who came before us have changed what is possible. It is not lost on us that Mason was born during a time of extraordinary advancement in SMA care. Access to modern treatments has shaped his life in ways we could never have imagined.
Without those decades of relentless advocacy, fundraising, and belief, Mason wouldn’t be here today. Events like the Rebecca Run are more than a gathering—they are a reflection of 25 years of progress, perseverance, and community. They represent the lives changed, the voices amplified, and the futures rewritten because people chose to keep showing up.
As we mark this incredible milestone, we are filled with gratitude for how far this community has come, and for the responsibility to continue moving forward together. Because there is still more to do. More families to support. More progress to fight for.
Through Mason, we have learned that two things can be true at once. We can grieve the life we once imagined, while also feeling profound gratitude for the life we have. For the people we’ve met, the perspective we’ve gained, and the way our eyes have been opened to what truly matters.
We are deeply honoured to have Mason recognized as part of this 25th anniversary of the Rebecca Run. His story is only possible because of this community—and it is our hope that together, we will continue to build a future where every person with SMA has the chance to thrive.
After a fairly routine pregnancy, aside from a lack of kick counts in the final weeks (with no red flags raised during follow-up), our son Mason finally arrived.
Although an emergency C-section was required, we felt a sense of calm—we had been in that situation before with our first. What we were not prepared for, however, was Mason’s profound hypotonia and absence of reflexes at birth.
Being delivered in a province that did not screen for SMA at the time, Mason underwent countless invasive tests before we finally received our answer one month later: a severe form of spinal muscular atrophy.
The highs and lows we have experienced since that diagnosis are all too familiar to this community - a community we never would have chosen, but one we now cannot imagine our lives without.
Mason has opened our eyes and the eyes of so many he meets to the importance of a more inclusive world. This outspoken kindergartener is proud of his wheelchair and never hesitates to make a new friend. He has taught us to find deep joy in the simple moments - moments others may see as small, but for a family once told their child may only live to see six months to two years, they mean everything.
It is also because of this community that we get to experience those moments. The families, advocates, and researchers who came before us have changed what is possible. It is not lost on us that Mason was born during a time of extraordinary advancement in SMA care. Access to modern treatments has shaped his life in ways we could never have imagined.
Without those decades of relentless advocacy, fundraising, and belief, Mason wouldn’t be here today. Events like the Rebecca Run are more than a gathering—they are a reflection of 25 years of progress, perseverance, and community. They represent the lives changed, the voices amplified, and the futures rewritten because people chose to keep showing up.
As we mark this incredible milestone, we are filled with gratitude for how far this community has come, and for the responsibility to continue moving forward together. Because there is still more to do. More families to support. More progress to fight for.
Through Mason, we have learned that two things can be true at once. We can grieve the life we once imagined, while also feeling profound gratitude for the life we have. For the people we’ve met, the perspective we’ve gained, and the way our eyes have been opened to what truly matters.
We are deeply honoured to have Mason recognized as part of this 25th anniversary of the Rebecca Run. His story is only possible because of this community—and it is our hope that together, we will continue to build a future where every person with SMA has the chance to thrive.
