Tom’s Trust Co-Founder Debs Whiteley has spoken to Cambridge 105 Radio about all things Tom’s Trust – how it began, how it’s grown, the wonderful families the charity supports and of course her “kind and loving” son Tom who sadly died in 2010. Take a listen to her moving interview.
“It’s really important that children like Tom and families like ours are supported in a way that we weren’t, which is why we set out what we wanted to do, and we’ve got to make those changes.”
Presenter Glenn Jones asked Debs to start off the interview by talking about Tom and what he was like.
Debs said: “Tom was amazing… We saw him in the hardest of situations and he was always upbeat and loved his music. He spent a lot of time in hospital obviously, and we miss him. He was very stubborn, when he decided to do something he was definitely going to do it and achieve it and he hated being last, he was always at the front, I remember cycling with him and he never ever wanted to be at the back. And he had a very good sense of humour.
“Really importantly the thing I remember the most actually is he was very kind. When we lost him we had a lot of messages from people. There were so many stories of him which we didn’t know about of him being so kind and looking after people. What a wonderful little boy he was and we do really miss him.”
Glenn went on to ask about what the family’s experience of a diagnosis was like.
Debs said: “It’s really hard to put into words. It’s very traumatic which is why I just knew there had to be changes because when you receive that diagnosis you can’t really believe it and it’s really hard to process that actually, that that is what’s happening to your child.
“You get documents and leaflets and something had cancer on it and you just don’t believe that that’s your world. That that is anything to do with you so the trauma is huge actually and obviously children like Tom are in and out in hospital and have lots of operations as well. Having one operation is a hugely stressful thing but trying to get your child back into hospital to do that again is very very stressful. It’s really important that children like Tom and families like ours are supported in a way that we weren’t, which is why we set out what we wanted to do, and we’ve got to make those changes.”
Talking about mental health funding versus physical health funding, Debs said: “It’s always been the poor relative to physical health. The medical professionals have understood that but there aren’t the funds to make the changes necessary to make it equal. Your mental health is really important and it’s as important as your physical health.”
Debs went on to talk about why funding to support children with brain tumours is so vital.
She said: “The site of the tumour means they need more psychological intervention than perhaps other types of cancer. But if I had my way I’d want to do it for all families who had a devastating cancer diagnosis of their child. But because of brain tumours being in the brain the child is getting used to their new normal, children are mostly very changed and the family need to get used to their new normal too. They’re usually physically or cognitively changed so their learning abilities aren’t the same, or both. There’s a huge spectrum of change that happens to the child and the family need to get used to that too, so it’s really important that we make these changes in the UK, and we will do it.”
Debs went on to say how Tom had to learn to write again and walk again, and never learned to run again. She said how all families she met had different journeys, which are all “very, very tough”.
Talking about bereavement, she added: “Living without your child isn’t something you will ever get used to, that is your life changed forever. Every day looking around knowing your child isn’t there. I know that because I live with that every day. It is the most devastating thing that a parent can go through. We’re very lucky, we had two beautiful girls and we love them even harder than we ever thought was possible because we have to live without Tom. It’s very, very tough and those families need support and the siblings need support for how to live without their brother or sister. And to come to terms with that loss in whichever way they can but there is no going through it or getting over it, in my experience it’s learning to live with it and it’s a very painful thing to live with.”
Tom’s Trust is proud to be helping more than 300 children and their families get the mental health support they need during such a difficult time in their lives. Speaking about what she’s most proud of, Debs said: “I think all the families we’ve helped, all the hundreds of children we’ve supported and the untold family members we’ve managed to support. I know as a parent what my journey was like and how different it could have been with the right support, so what I’m most proud of is the children and families we’ve managed to support.”
If you’ve been moved by Debs’s interview, please consider donating to Tom’s Trust to help us to support as many children as possible across the UK.