Gideon’s Celebration of Life

In December of 2021, my brother Alex and his wife Samantha had their lives turned upside down when their 7 month old son Gideon was diagnosed with spinal muscular atrophy (SMA) type 1. This is a rare neuromuscular disorder that causes progressive muscle wasting. SMA type 1 is one of the most severe types of SMA, and prompt treatment is necessary for survival.

Life with SMA is a whole new world - Alex and Samantha have become full on medical parents and must have many medical machines with them wherever they go. Gideon sleeps with a BiPap machine to help him breath. He does not have much muscle to swallow, so he is fed through a tube in his nose with a feeding machine. For this same reason, they also have a suctioning machine to pull the saliva and snot from his nose because he cannot swallow or sniff to get rid of it on his own. This is a frequent occurrence and they must always have the machine close by. He also has a cough assist machine to help make sure liquid doesn’t settle on his lungs.

Gideon became the third baby in Saskatchewan to receive the 2.9 million dollar gene therapy treatment, Zolgesma. Since this treatment is so new, the doctors cannot give Alex and Samantha much information on what to expect, but the trials have been promising and give hope beyond the current SMA type 1 statistics. Currently Gideon has very little muscle control, but the hope is that Zolgesma will slowly help him gain muscle to do things like hold up his head, swallow, eat food, and move his arms and legs. We continue to hope and pray for Gideon’s future, and get excited over every new movement he makes.

The money from this page would go directly to help cover the many medical costs to go along with SMA life. Gideon is currently being fitted for a special wheel chair and standing frame. He is also waiting for a car seat where he can lay flat because the infant car seat holds him in an upright position that makes breathing difficult for him. The money would also help with things like medications, specialized therapy and equipment, replacement tubing for his feeding machine and other medical supplies, transportation costs to his far away appointments, hospital stay costs, and emergency transport fees. Recently Gideon battled covid and had to be air lifted to Saskatoon. Not only was this a scary and stressful experience for Alex and Samantha, but it was also financially taxing. While Gideon recovered from covid, scenarios like this are bound to happen again. With SMA, even the smallest cold can become a medical emergency and send Gideon to the hospital.

I am very proud of my brother and his wife and everything they have done and continue to do for their son. Please consider supporting them to help ease the financial stress that comes along with being medical parents.