I’m helping kids be mighty
Meet Noah,
Our mighty baby boy.
Shortly after we welcomed him last July, we were given his unexpected and rare diagnosis of Spinal Muscular Atrophy (SMA), a progressive genetic disease that affects normal muscle function overtime.
Through the Newborn Screening Program in B.C., Noah was diagnosed quickly and a care team was established at BCCH. There, he received gene therapy at 12 days old, a treatment that aims to prevent muscle loss by instructing Noah’s body to produce the protein that he was born without.
Noah continues to have frequent appointments at BCCH and is monitored by many specialists on his care team including neurology, orthopedics, cardiology, respiratory, radiology, physiotherapy, occupational therapy, dieticians, nursing, research, and social work to name a few.
And although he has had more tests and bloodwork than any baby should have to have, he is always smiling. He is a bundle of sunshine and emits joy. He is an inspiration and the strongest little guy we’ve met. This is no doubt due to the strength of his wonderful Mama and Papa.
This June, we walk and run for Noah. We walk to show our support for all the little fighters, for all the mamas and papas fighting alongside them, and we walk to support the hospital that has allowed us to receive such kind and prompt treatment. It is never fair when someone so little has to go to the hospital, but places like BCCH makes it a little more bearable.
Please consider donating if you can. Let’s help BCCH continue to give the support it does to baby Noah and his family.
Thank you for your support.
-- Noah's Auntie, Mom, & Papa
