May – Aaron the ninja warrior!

Mr Gorgeous

Aaron’s story is written by his mum, Polly.

My first nickname for our Aaron. Looking at him with his gorgeous head of curly hair, beautiful eyes and smile he was our Mr Gorgeous, smiley son, much wanted and loved curly boy.

He is turning 9 on 27th May and is still completely gorgeous in so many ways. He has an amazing imagination and can create worlds in Minecraft or with Lego or in the comics he draws. He has a love of space and Star Wars and an attention to detail that keeps us on our toes. He knows exactly who each of his many (identical to me) clones are and if they are missing any of their miniature, easily lost parts. He remembers amazing facts about things that have piqued his curious mind. He has a love for the Mariana Trench, Megladons, The Army and history – especially the war and the ancient Greeks. He loves imaginative play and has always been happiest when holding a special miniature figure in his hand. It is hard to sum up all the many amazing facets that come together to make our wonderful little boy.

The part that we have learnt to accept is the fact that our boy lives a life still affected by spasms he had when he was little. Aaron started to have seizures when he was 7 months old. He had his first seizure on Boxing Day when we were celebrating his 7 month day. The movements we noticed were subtle and we were reassured he was OK, but, he wasn’t. He continued to have clusters of movements on waking which we monitored with no idea really of what to look for or what to do. When I took Aaron to A & E after he had a very long series of movements I remember being asked “it’s not spasms is it” to which I responded “no it isn’t that” even though I had no idea what spasms were. I think I imagined some sort of muscle spasms. Aaron had an emergency EEG and we were told that it was in fact Infantile Spasms or West Syndrome.

Aaron then endured the many tests and procedures needed to get him the right treatment and support. It was incredibly tough on his little body and mind. I called Aaron my “sonshine” and
through such an awful time he continued to shine bright and give us lots of reasons to be grateful. And we are incredibly grateful for Aaron. Aaron lives with differences caused by spasms with
resilience and enthusiasm. He is a truly sensitive soul with lots of energy! He has taught us so much about being parents and changed the way we see so many things. He is a brilliant big brother, carer of guinea pig Squeeky and brilliant play mate to his friends and family.

We were so glad to find the UKIST group on Facebook. When Aaron was having spasms and when he was diagnosed we found that there was very little support. We had to manage lots of things we felt ill prepared for (not least loads of medication) and although the NHS were amazing it was rare to find someone who has experienced spasms before. The fact that families can post videos of their
concerns and also talk about the different aspects of spasms is brilliant.

UKIST helped us with a grant for an Educational Psychology assessment which we are currently using to apply for an EHCP with Aaron’s school. This has been a great support and will help us to ensure Aaron is well supported through his school life.

When I told Aaron that he was going to be the May Warrior for UKIST he told me this was great and gave a big thumbs up! He asked if he could be known as the Ninja Warrior!