Little James Spinal Muscluar Atrophy(SMA)Journey

My sweet little James has just recently been diagnosed with Spinal muscular atrophy(SMA) we are awaiting an appointment to see his neuromuscular doctor to determine type 1or2 either way we know we have a very long road to go in his SMA journey. SMA is a serious incurable genetic condition that makes the muscles weaker causing problems with movement that's get progressively worse over time. We know in time that little James will need aids to assist him physically like specialist wheelchairs, carseat and other equipment that will allow him to live his life to his full potential. We really would appreciate any help that you can give us though this difficult time of uncertainty. We thank you from the bottom of our hearts. I know this is such a difficult time right now with everyone trying to fight a pandemic but we are here fighting extra hard for our little James to be able to live a long, fun, filled happy life. 3 days ago we got the news every parent dreads that our little James has an incurable genetic condition that will mean full support for the rest of his life which we don't know how long that will be. My little James was diagnosed with spinal muscular atrophy(SMA) a serious genetic condition that causes muscles to weaken that get progressively worse over time. Me and my husband have read and read so much about the condition and feel that there is treatment options available which would mean 4 monthly spinal injection for the rest of his life but would mean my little James could be with us living his life to his full potential. We know this is going to be tough and we remain hopeful that we can give James a really good life but we know its going to hit us financially and emotionally and that why I'm reaching out he will need a specialist wheelchair, car seat, walking or standing aids and many more aids alone the way we also have also researched some other potential treatments not offered on the nhs. Traveling every few months for treatment will also be a big experience to. I'm his mummy and I need to do what ever I can to help him though this. Even just a small donation would mean the world but I also understand the current situation to. Thank you for reading and if u can share my page for James that would mean the world to. Much love The Goodwin's Mobility aids spciality wheel chair spinal board Traveling for treatment every few months. Possible new drugs that may become available Medical expenses if we go private for best care Home adaptations