At 10 months old Van Bernard was diagnosed with an incurable degenerative disease called Spinal Muscular Atrophy Type 2. SMA is a rare, genetic, muscle wasting disease that affects one in 6,000 babies. As such, Van has been in a power wheelchair since he was 18 months old, and has had numerous hospital stays due to double lung pneumonia.
Van requires numerous pieces of specialized equipment to keep him healthy and out of hospital. Much of this necessary equipment is not covered under private insurance or our Provincial Government. So far, in his short 6 year life, we, his parents, have been able to provide life-sustaining equipment for our son with the help of various organizations. Standers, back braces, binders, foot orthotics, wheelchairs, nebulizers, ramps, lifts, a wheelchair accessible house and his cough machine all come with a hefty price tag. These are all important pieces of equipment and enablers for our little man Van and we do our best to make sure he gets what he needs to lead a long and productive life- as long as SMA will allow.
We are blessed that he continues to thrive and grow into an intelligent, funny and always smiling little boy. But as he gets bigger so do our challenges.
We have exhausted all possibilities for funding assistance towards the purchase of a wheelchair van. These modified vehicles are roughly twice the cost of a non-modified vehicle. Left with no other choice, we are asking for your help so we can get him to and from appointments and anywhere else he wants/needs to go in a safe and secure manner. Transferring him from his power chair to a car seat that is too small is no longer safe – both for him and the parent carrying him.
Thank you for taking the time to explore our request. Your donation would mean a great deal to our family. Every little bit counts!
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The Bernard Family