Support Baby Mason with rare Type 1 SMA diagnosis

My heart is breaking for my best friend, Lindsay, her family and their newborn baby, Mason.

In late June, Lindsay and Mike welcomed their second child into the world, not knowing what would be a very tough journey ahead. When Mason was born, the doctor detected hypotonia (floppy baby syndrome). Upon further genetic testing he was diagnosed with a very rare genetic condition called Type 1 Spinal Muscular Atrophy (SMA). Without treatment, babies with this condition often don’t survive to their 2nd birthday. Lindsay and Mike did not see this coming and are rightfully devastated. Mason has initiated Spinraza treatment to build his tiny muscles and will hopefully receive gene therapy treatment on September 2nd. This will hopefully slow the progression of this tragic disease. However, it will continue to be a long road ahead to help Mason cope with this debilitating disease. His parents will be faced with a lifetime of pharmaceutical costs, physiotherapy, occupational therapy, respite care, specialized child care, home retrofitting, accessible vehicle, mobility aids (wheelchairs appropriate for his age/ size / and abilities, potential standing aid and/ or walkers, braces), amongst other supports and unexpected costs related to raising a child with SMA.

As this is a rare genetic disease, Lindsay and Mike are committed to raising awareness and advocating for children with SMA. Currently, SMA is included in the newborn screening in Ontario, and a pilot project was recently announced in Alberta. They do not yet screen for SMA in Saskatchewan, BC or other Canadian provinces, which causes this disease to go undetected and can result in delayed treatment or death.

I, like so many parents, know the joy of bringing home a healthy baby. What should be a very happy time settling in to life at home, they spend their days in hospital fighting hard for their little guy, plagued with worries of the future. Please support my friends Mike, Lindsay, big sister Mya and little man, Mason, by reducing their financial burden as they navigate this debilitating disease. You can follow his progress on Instagram @mybrothermason and reach out to them at [email redacted]

Thank-you for your support and love ❤️

— Ashley Taylor (aka Rianne Williams) on behalf of Mason’s family and loved ones