Hello!
As many of you know, our 8 year old son Vinny, has Duchenne Muscular Dystrophy. Despite having Gene Therapy in 2023 to help slow progression, Vinny has started to quickly decline in his mobility over the last 6-12 months. He is 100% toe-walking now due to contractures in both ankles and is unable to walk or stand for more than a few minutes at a time without needing to sit or hold on to something to stable himself. Last Fall, he started frequently falling. Vinny already has two compression fractures in his back caused by previous falls and I called his doctors concerned. His doctors reassessed him and feel that the weakness is progressing in his hips and torso, causing the instability and balance issues when walking. His Northstar Assessment scores (a PT assessment done every 6 months to monitor progression) have also dropped from a 26 to a 17 for the last 18 months. Due to the consistent drop in this score, they were able to confidently identify these changes as disease progression.
On average, most children with Duchenne fully loose the ability to walk and bare weight between the ages of 9 and 12. We don’t know when this will fully happen for us but because of the increased weakness and falls, his doctors are having us start the process of getting him a power wheelchair to help him get around and also save what muscle he does have left.
We should have his power chair in a few months. Unfortunately, we don’t have the means to buy a handicap accessible vehicle yet. We have always talked about doing a benefit for Vinny for medical costs and things like this but honestly, the amount of money up front and time it would take to plan a successful benefit, is more than I can do right now. So, I’m starting the go fund me to help buy a trailer and ramps to transport the new wheelchair, two stairs lifts for our steps at home (currently we carry him up but he is almost 90 lbs now and it’s getting more difficult), we also possibly need a few doorways widened and eventually when we’re able, a handicapped accessible bedroom/bathroom/shower. Of course when we purchased our house 13 years ago, we were young and didn’t plan for the illnesses we have been faced with…between pay cuts and medical expenses, our home needs a lot of work to be safe and accessible for Vinny.
Our insurance covers the cost of the power chair thankfully, but they do not cover any home modifications or additional equipment. We also do not qualify for any state assistance because Mike and I both work and Vinny cannot receive SSI benefits through the state yet either. Also, because of Mike’s Multiple Sclerosis, he is down to only working four days a week so everything has been a constant struggle. The hospital has Vinny a list of local nonprofits to apply for grants but I am so overwhelmed. Please, do not feel obligated to donate, but if you can, anything would help us make these improvements for Vinny and help him keep some of his independence. Thank you so much!!