What has your experience been of filming this series?

“Filming is surprisingly easy as they literally follow our lives. With William we are generally too busy to worry about having a camera in the room. The production crew try and keep some consistency, so we get to know them. We have become firm friends with the old hands now and other families on the show, so it feels like a big family.

Being followed as William had surgery was tough but also therapeutic. They can be a distraction; surgery days are horrid and William’s had two lots of brain surgery. They ask us the questions we probably would think of but not say out loud and that’s strangely good sometimes. William quite likes the attention, especially if there’s a young lady involved in the process! It’s hard sometimes watching his behaviour back as he can be really challenging, the cameras only get a tiny fragment of that. Jessie is quite insistent she has a dent on her head where he hit her on the programme. Losing Shelbie (one of the other Born to be Different children) has been hard on us all and getting together to celebrate her life was something we will always treasure.”

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.”