Our boy Vinnie

Our son Vinnie was diagnosed at 9 weeks old with a genetic disorder called Spinal Muscular Atrophy. He has type 1 which is the most severe. It's a progressive disorder which causes the muscles to waste at a rapid pace causing him to lose the use of his muscles. They say he will never hold his head, sit unaided, walk and he will eventually lose the ability to swallow and breathe. 1 in 40 of us are carriers of this faulty gene and when 2 carriers have a child with this they have a 1 in 4 chance of having a child with the disorder. Most babies only live 2 years but most die before they reach the age of 1. Thankfully we have managed to get him on a new clinical trial that has had success in the states. With the hope this will delay the progressiveness and give us time to work on keeping him strong and help him meet milestones that the doctors have said he will never reach. He is of sound mind and they say that SMA children are very bright and intelligent. The NHS are doing what they can but to be honest most of the advice on care for SMA babies we are getting from the states as they seem to condemn them from the start here. We have had amazing help from a charity called Act For SMA who have given us equipment that he needs now for us to feel safe and allow us to sleep at night.
We want to raise funds to give back to the charity that have helped us and also for the other equipment that Vinnie needs to help make him stronger and provide him with a better life like a disability car to transport Vinnie safely as the government do not provide help with mobilty to babies under 3 and there are no car seats out there to suit his needs without laying him flat across a back seat and then there is no room for all his life saving equipment. For every £500 we raise £100  will be donated to ACT for SMA. If we raise over our goal then the money will stay in Vinnie's account to ensure there is money there for further equipment /treatment he may need as he grows and we also wanted to build a sensory play area in our garden so that Vinnie can enjoy playing just like any other child.
We held a family fun day in the summer and we have a number of fundraising events taking place come the new year  with donations of some amazing people and with that help and support we will get Vinnie what he needs. If you would like to make a donation any equipment that we no longer need we will donate back to the charity that has helped us so much.

Thank you