What we’ve learnt is families with a disabled child are awesome! We are all so different but we are always there for each other. In an early show Shelbie had a prolonged seizure and her mum texted me at 3am, with TSC William never slept so I responded straight away – I was the only one awake. We really are a tight knit group. Our children have grown up together and are firm friends. That’s so good for William who due to his autism and behaviour doesn’t really have any friends. People we knew have distanced themselves as he became more challenging, it’s not easy to keep up friendships when William throws things at visitors. He views the other young people as his friends and was so happy they came to see him in his flat. He Facetimes Zoe a few times a week too.
The good thing about Born to be Different is that it shows the good bits as well as the hard times and medical procedures. William can be really challenging and has a scarily accurate aim, throwing his catheter bag at us when he’s cross or unwell, he also has the best sense of humour and comic timing. He’s incredibly loving and will still sit on our knee if he can and give the best sloppy kisses. I think it’s good for the world to know that TSC can be devastating but there are also so many high points. William is now being treated palliatively as he couldn’t cope with everolimus, it made him really ill. His life may be shortened but it’s been full of fun and laughter.
I’m happy he’s been able to educate so many people about TSC and how amazing his life is.”