- Date published: 12 Sep 2014
Hi, my name is Ben, I am 13 and have Spinal Muscular Atrophy which is a rare neuromuscular disability. This means that the signals from my brain don’t get to the muscles in my arms and legs properly. Consequently I cannot walk and need twenty –four hour support for all of my personal care. I have an electric wheelchair which has a controller that can connect to a computer using Bluetooth, so I can activate and use the cursor on a computer screen with my wheelchair joystick because I can’t use a regular mouse. It also means I can use a PS3 using a special connection, something I couldn’t do otherwise. My wheelchair is my lifeline and I couldn’t do without it.
My family and I have fantastic support from Rainbow Trust and our family support worker called Jayne. She comes around and gives my parents a break by bringing different messy activities for my sister and I to do and enjoy for an hour or two including baking cupcakes and arts and crafts.
Rainbow Trust points us to different charities and activities that they think may be able to help us. This is important because Mum and Dad don’t always have time to look or have the chance to think about them. As well as all of that Rainbow Trust give me and my family some great opportunities. For example, in 2012 I got the pleasure of being asked to race on the Olympic track in a test event in London. We also went to a charity event which was full of celebrities including world boxing star and Rainbow Trust supporter Frank Bruno. My sister and I were asked to give a speech at number 10 Downing Street about our experience of Rainbow Trust which was hosted by Samantha Cameron and it was a proud moment for Mum and Dad. Jayne often helps and supports us when I’m in hospital or ill; this can be a particularly tiring time so having Jayne around is fantastic.
Having Jayne and Rainbow Trust to help is very important because they are brilliant and understand the support and help we need. Thank you all for everything you have done for us!
If I could offer one word that sums up Rainbow Trust it is…. Inspirational.
Having a physical disability can feel very annoying at times because I can’t do what other people can do like football, riding a bike and walking however I don’t let it get in my way, I say it’s annoying because I have grown up with it but it’s an all-round pain in the bottom. I wouldn’t say it makes me feel upset; however it’s incredibly exasperating when we go out on a trip because we have to find out whether it’s accessible and has stuff like toilet facilities. The beach makes me feel particularly frustrated because while my sister goes off and has fun I have nothing to do. Another thing that I get frustrated about is having adults around when I don’t need them, this makes me feel restricted because I can’t mess around with my friends. During the week I have physiotherapy which can get extremely boring and painful, I know I need it though because otherwise I get very stiff.
The support Rainbow Trust gives my family is brilliant because they understand how to help me in a practical way, physically and emotionally. The way Rainbow Trust help my family is super. They chat to my parents about anything that is concerning them. My sister has great fun with Jayne and always looks forward to her coming. When I go into hospital I can feel extremely bored then Jayne comes and cheers me up a bit which makes me very happy. If we didn’t have Rainbow Trust I think life would be very different and not in a good way!