When interviewing Alex for this User Story I asked him what he liked most about his new Helio C2 wheelchair. I was expecting him to say the colour or the cool wheels with matching orange spokes. His answer pleased me even more than the charming Newfoundland inflection in his voice “Probably that I got no more pain now”. Prior to receiving his Helio, Alex was taking pain medication every 8 hours and his medical team had recommended a Baclofen pump as the next step in his pain and spasticity management plan. Since receiving his Helio, Alex and his mom Joni report that, not only has Alex stopped taking pain medication, he is also more independent than he was in his previous wheelchair. Alex is now able to easily self-propel and he can even go to the park by their house on his own. Joni describes the first time Alex propelled himself in the Helio, “Well he just about went through the wall! He doesn’t have to push as hard in this new chair…it’s just like silk.” Both Alex’s teacher and school principal have approached Joni to tell her that they have seen a significant improvement in Alex’s ability to attend and focus at school since he has had his new wheelchair.
Alex was 3 when doctors confirmed the diagnosis his mother had been suspecting since he was 18 months old: hereditary spastic paraplegia (HSP). HSP is a rare neuromuscular condition that runs in Alex’s family and causes loss of sensation and movement in the lower extremities. Joni explains how she sees Alex’s diagnosis in a positive light “If Alex hadn’t been diagnosed we never would’ve met these angels” referring to Alex’s medical team. One of those angels is Alex’s OT. She was the one who recommended that Alex apply for the Motion Composites Donation Program. The donation program provides a free wheelchair to someone in need in Canada every three months. Joni recalls telling Alex that he had been selected “The first thing he said was ‘Can we call work and tell daddy?’ ” Adrian, Alex’s dad had been losing sleep worrying about how to come up with the outstanding balance for a new wheelchair. Joni reports that a huge weight has been lifted from her husband’s shoulders “We wouldn’t have been luckier if we’d hit the lottery. This is much more than just a chair for us. You have no idea. This is priceless”
Thank you for sharing your story Alex.