Wheels for Isaac

Isaac is a bright and smiley nine year old who was diagnosed with congenital muscular dystrophy at eight months old. The CMD causes muscle weakness and every milestone and new skill Isaac has learned over the years takes hard work. He never lets it bother him that simple daily tasks are a huge challenge. When he got his first wheelchair at three years old he quickly got a feeling for independence and he’s been on the move ever since. Isaac’s wheelchairs allow him to play with his friends at school, explore his world around him, or even get himself a snack from the fridge. As he grows, his wheelchairs need to grow along with him. He’s outgrown the expansion capabilities of his small manual wheelchair. His power chair is five years old and doesn’t have the ability to meet his changing needs. As Isaac gets bigger his specialty equipment and devices are growing along with him. He has never been able to stand or walk so new challenges come along with lifting and transferring him safely each day. Chairs, standing frames, lifts, orthotics and regular trips to the children’s hospital are routine for Isaac.

We are very fortunate to have blue cross benefits which will help us with ONE piece of equipment every five calendar years. This leaves us responsible to handle the rest of the cost with one income as I gave up my career to be a full time caregiver to Isaac.

The new power wheelchair we are hoping to be able to acquire for Isaac is the permobil F5 which generally costs in the $40,000 range. The new manual wheelchair is in the $6-$7000 range. Add to these big price tags the cost of a vehicle lift or accessible van to transport these chairs and the cost feels a bit astronomical.

The children’s hospital is aware that these special needs equipment costs are incredibly difficult for families to cover. Many families are struggling to manage these and apply to different grants and organizations for funding. A lot of grants and funding support have been cut off or are spread thin with long waiting lists and smaller availability. This is where families like ours sometimes turn to a gofundme.

Any donations to support Isaac would be used to fund the equipment that Isaac uses each and every day. His wheelchair allows him to be as close to a normal nine year old as possible. He can participate in school activities with his peers. He can play outside. He can chase his doggy if he wants to. Isaac is very social and loves to interact out in the community. Without his proper equipment it becomes more isolating and challenging to participate in society.

We are incredibly grateful for you taking the time to read about Isaac. Some great words to describe Isaac are determined, silly, mischievous, intuitive and kind. He’s got a light in his eyes, most people who meet him notice it right away.