12th November 2024

I am Bobby and I am 13 years old. I have Spinal Muscular Atrophy (SMA) type 3. My SMA is called type 3 because I walked when I was younger. Over time I have become weaker and lost the ability to walk.

I live in Worcester with my Mum, Dad and brother Freddy who is 9.

I was diagnosed just before my 2nd birthday after having lots of scans and tests, when finally, a blood test confirmed I had SMA. My mum had noticed I wasn’t walking the same as other children my age and I kept falling over backwards and hitting my head.

I walked till around 5 years old when I started to struggle a bit more and needed a frame to help me. I do stretches daily to help with the way my joints tighten around my hips and knees. This is due to my weak muscles. It makes it difficult to move those joints and can cause me pain. I also have a standing frame that I use daily.

When I was first diagnosed there was no treatment available. I just had to try every day to maintain my strength and keep doing my physio with my mum and dad. Slowly losing my strength and seeing my friends develop more strength was hard. Eventually 4 years ago treatment did become available, and I now have a drug called Spinraza that I have every 4 months. This is given to me at hospital by a lumber puncture. The doctor inserts a needle into the lower part of my spine and injects the drug directly into my spinal cord. Some people have just a local anaesthetic for this. I have to go under a general anaesthetic so that I am completely still.

It is fairly quick, and then I can return to the ward. Once I am back on the ward, I have to lie flat for an hour to allow my body to recover. Then my mum always makes me a snack table full of yummy treats.

Hospital visits are a big part of my world as I have regular 6-month appointments with the neuromuscular consultant. While there they check all my ranges of movement all over my body, They check my lung capacity and encourage me to complete a variety of exercises/tests to check my strength and ability of movement, as well as checking my overall health and if we need anything at home or school.

I attend yearly sleep studies (I don’t know why they call it a sleep study as when you are hooked up to machines that beep and have wires on you, I don’t get much sleep). This is to check how much oxygen I breathe in and Carbon dioxide out while I am asleep.

Because of my muscles weaking, my spine has developed what’s called a scoliosis. My spine is currently curving over to the left side of my body, and I see a spinal consultant every 3 months. I have to wear a spinal brace every day under my clothes. I am waiting to see when I will have spinal surgery to have rods put in my back to help keep me straighter.

Now I am unable to walk at all, however I play Powerchair Football, and I am currently 2-time European Champion after winning the Goals Beyond Grass (GBG) Geneva Cup 2 years in a row with my team – All Stars.. Powerchair football is incredible for me to be able to play, not only have I made amazing friends along the way, I have found a sport I can fully take part in and enjoy. I play for Aston Villa in the Premiership League that takes place in Nottingham and I am also on the pathway to play for England. I train with current England players learning amazing skills from them.

Outside of school and my powerchair football, I support Liverpool FC and enjoy watching them play on TV. I also enjoy playing on my X-Box with my friends. I like going out and catching up with my friends in the park or at bowling.