Read Paula's Full Letter
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"It's not what's under the tree that matters, it's the people around it"
If there's one thing that 2020 has taught us all, it's that family and health are the most important things we could ask for. But for many families with a child suffering with a serious illness, this can be a tough time of year. Tom Tom, his mum Paula and the rest of the Cahill family know this better than most.
There's still time to support our Christmas appeal and help the families that need us most as we head into the New Year. Read Tom Tom's incredible story below and please, if you can, make a donation today to help us Press Play on childhood for those who need us the most.Make a Donation
Paula Cahill joins Ray D'Arcy to speak about her son Tom Tom and the support Barretstown provide for children, and their families, living with serious illness. Click here to listen now or scroll on to read more.Listen Now
There are more than 8,000 campers on our waiting lists that urgently need our help.
Tom Tom was born on the 14th December 2014. He's the youngest of three boys. His brother Jack is 11 and Charlie is 8. His dad's name is Tom too so everyone knows him as Tom Tom. He was always a happy baby, but on Valentine's Day of 2016, everything changed for him and his family. His mum Paula remembers all too well. ''We were referred to the Mercy Hospital here in Cork. My poor baby had a tumour the size of a grapefruit on his left kidney. Tom Tom had cancer.''
He was rushed to Crumlin where they gave him his first dose of Chemo almost straight away. In March, he had surgery to remove his left kidney. The entire family was in shock, including Tom Tom's big brothers. ''That's when a social worker suggested we visit Barretstown. So when Tom Tom was 15 months old, that's what we did. It was exactly what we needed - a chance for the whole family to spend some quality time together. We had an amazing time, but it was only just the start of our Barretstown journey.'' - Paula.
''In October, we saw the doctor and he said he was closing the book on Tom Tom. We could just go away and enjoy our lives. I had no idea how bad things were going to get.
Just a few weeks later, it was obvious something wasn't right with Tom Tom. He was crying all the time and seemed to be in a lot of discomfort. Tom Tom was rushed to hospital where they ran a chest x-ray. His left lung was completely full of tumour. The tumour was so big it was pushing over onto his windpipe and heart. The doctors said he was within days of death.''
''On December 1st, Tom Tom's tumour started to bleed into his lungs. It was a major emergency. We were told it was touch and go whether or not he'd survive. Tom Tom spent a total of seven weeks in Crumlin while my husband and I stayed with him. It was devastating for our whole extended family too, and it was especially hard on Tom Tom's grandparents. They had to be like parents to my other two boys for months - helping with homework, bringing them to school and trying to keep things as normal as possible.
Tom Tom spent his second birthday in Crumlin. My own dad said it was definitely the saddest day of his life. He was heartbroken to see Tom Tom so sick. I was with Tom Tom on Christmas Day while my husband went home to Cork to be with Jack and Charlie. It was the most utterly miserable Christmas any of us could have ever imagined, not even Santa was allowed in the room for infection control.''I want to Donate
Will you make a donation so that together with Barretstown, you can Press Play on childhood for the families that desperately need your help this Christmas?
''When we finally got Tom Tom home, he was still terribly ill. He couldn't walk or talk. He had so much healing to do. For the next year or so, our lives were ruled by hospital appointments and fear of infection. In July 2017, Tom Tom had another surgery, this time to remove part of his left lung and his diaphragm. He was in intensive care for 6 days. It was such a difficult time for us all, we were terrified.
One day, I was talking to the social worker in Crumlin about it and she said ''I've got to get you back to Barretstown.'' As soon as she said it, I realised we were desperate for Barretstown at that stage. We needed it as a family. So in August we went to Barretstown for the second time. It was an amazing trip. The boys were so carefree.''Donate
``I remember sitting there, listening to them laughing, and I thought 'I haven't heard that sound in so long`` - Paula, Tom Tom's mum
''Barretstown is vital for families. You can park your worries at the gate and enjoy being together. As you drive up the road towards the castle, you can literally feel your breathe release. We went back two more times, in March 2019 and again in January this year, as we continue to heal as a family. I'm just so thankful for everything Barretstown have done for us.
We got to experience their Barretstown Live programme during lockdown too. It was a great lift for the kids, needed so badly during such a hard time. COVID-19 has been a big worry. Tom Tom only has one and a half lungs and one kidney, and he's still within five years of cancer treatment so he is high risk.''Donate
''We've been so lucky. Tom Tom's finished his treatment and he's doing really well now. He still has check-ups at Crumlin every few months, but he's finally able to get on with being a little boy again. Every Day is magic for Tom Tom. He gets joy out of every day.
But not a day goes by when I don't thank Barretstown for helping us get to where we are today. And I'm extremely grateful to you too. You are creating happy memories in a time of sadness and fear. You probably don't even realise the impact of that, how important that is to a family like mine.
Now I'm really looking forward to a happy family Christmas. Ever since Tom Tom spent that awful Christmas in Crumlin, we understand that the real meaning of Christmas isn't about presents. It's not what's under the tree that really matters, it's the people around it. The greatest gift is that we're all together and we're all healthy.''Donate
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Will you help Barretstown be there for families coping with serious illness this Christmas by making a donation today?
Our arts and crafts team are always on hand with paint, facepaint, crayons, craft paper, bracelet beads, feathers and everything you can imagine, to bring out the creative side in each child!
All of our camps and programmes are designed to respond directly to the needs of a child living with a serious illness – both clinical and psychological. Our unique model of challenge, discovery, reflection and success is recognised by paediatricians and psychologists all over the world as an important and necessary component of a child’s treatment.
The loss of control that many children and their families experience as a result of a serious illness can gradually erode confidence, diminish self-esteem, body image and coping skills. We aim to give this back by empowering and encouraging each individual to step out of their comfort zone and begin to re-build their confidence, trust and self-esteem and discover something new about themselves and their ability.
We believe that fun should be an integral part of what we do. Fun and laughter are key ingredients in improving the lives of those affected by serious illness.
Our outreach programme brings the playful spirit of Barretstown beyond the gates of our beautiful castle into hospitals and communities all over the country.