Born to be Different is an ongoing programme on Channel 4 that follows the lives of six families affected by different conditions. Paula Davis and her family, including son William who lives with TSC, are one of the families participating in the programme.

We caught up with Paula to find out more about her and her family’s experiences of being part of Born to be Different.

The latest episode of Born to be Different aired in late March 2020 – you can watch it here, along with all previous episodes!

How did the opportunity for taking part in Born to be Different come about?

“The TSA were contacted by the production company (Richochet Television) when William was a small baby. They wanted a family with a disabled baby to follow for a year. The TSA asked us to do it as they had never had any mainstream publicity.

We didn’t like the idea of the cameras but said yes hoping it would increase understanding of TSC and help other families going through similar experiences. It was only ever going be a one-off programme but was so popular it snowballed and here we are 20 years on.”

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.”

How has the show had an impact on your family life?

“Family life is pretty normal despite the cameras. Sometimes it’s like living two lives. We once came back from a publicity evening at Channel 4 with lots of celebrities straight into William having a nasty seizure and vomiting everywhere. You just get on with it. People have said we are celebrities but we don’t feel like that at all.

The good thing about William in this instance is he keeps you so busy that you kind of forget there are even cameras around. He has been nicknamed ‘One shot Wills’ by the film crew as he won’t ever do anything again, you get one chance to catch what he’s doing so it really is a true to life documentary. We always check the children are happy to continue with filming. William likes the attention, Jessie obviously gets more reactions from peers as she gets older. She thinks it’s great though and if people make comments she doesn’t like about him she will tell them to educate themselves by Googling him – a great answer that stops people in their tracks.

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.”

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