“I can’t even begin to imagine what it would mean for my family if the support we currently receive was no longer available. Honestly, I don’t know how we’d cope. We’d be left feeling trapped and helpless, just like we were before.”
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Now imagine you aren’t given any information about what that means or where to go next.
Where would you turn?
Right now, 9 out of 10 families in Wales who have a child with a life-shortening condition are living without the support of a children’s hospice.
This means that thousands of families are living their child’s short life alone and often without any support.
To deliver our life-changing services, we need your help.
Make a donationWhen he was just two days old baby Cameron was rushed to special care. At one point he stopped breathing. It was an anxious time for new Mum Aimee however, after numerous tests, they were sent home. By 6 months, hospital visits were frequent as baby Cameron had started choking and was having chest problems. At 11 months, Cameron still couldn’t sit up, had a floppy head and was missing developmental milestones. An MRI scan was ordered to find answers.
“I knew there was something wrong from the very moment he was born, but after tests in the special care unit we were sent home. As a new Mum it was so stressful. I doubted myself because he was my first child. Even so, deep down I knew something wasn’t right. For the first year of his life, he spent more time in hospital than out. It was a rollercoaster. I was so worried”
“One day, when Cam was 16 months old, we went for yet another paediatric appointment. But this time we were called into a separate room to meet with the consultant. I knew something was very wrong. That’s when we were given the most devastating news – my precious baby boy had Joubert Syndrome, a rare genetic disease. It felt like my head exploded; it was so much to take in”
“And then we were just sent home. We weren’t given any information or signposted to any support services. I was so confused. It was so unexpected. I remember they said to me ‘have a look on Facebook and see if there are any groups for support’. I felt numb.”
“Cam is unable to speak. He has problems with his balance and breathing. He’s not able to dress or feed himself. He depends on me 24/7”.
“I was constantly worried and anxious, always tired. My life was a cycle of worry—I’d go to sleep anxious and wake up anxious. I felt so alone. Then Covid hit, and lockdown made everything 100% worse. I desperately needed help; I didn’t know where to turn.”
“I had heard of Tŷ Hafan, but the word ‘hospice’ scared me. I thought it was only for end-of-life care. I didn’t realise they could help me and my family. No one had ever explained the support they offer or suggested I contact them. The first time I came here, it felt like a huge weight was lifted off my shoulders. The name Tŷ Hafan is perfect because it truly is a safe haven.”
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I can’t even begin to imagine what it would mean for my family if the support we currently receive was no longer available. Honestly, I don’t know how we’d cope. We’d be left feeling trapped and helpless, just like we were before.
- Aimee - Cameron’s Mum
“As Cameron has grown older his personality really shines. He’s 13 now and he’s funny. He’s really funny. He’s witty and has a wicked sense of humour. He loves playing on his X-Box, he loves Fortnite and Wrestling. Everyone always says his smile lights up a room.”
“We go to the Stay and Play Hubs locally, which are fantastic. Cam loves the foam soap and slime. As soon as he sees it, his eyes light up with a mischievous glint. He’s definitely the instigator, but he loves having a partner in crime. I’ll see him give Anwen a side-eye and wheel himself over. Then we’re all laughing, covered in foam. I’m so grateful for these moments. That’s what Tŷ Hafan gives us: time and space to make memories together as a family.”
“Sometimes it gets to the point where we need a crisis stay at the hospice. I don’t like to ask because I know other families need the hospice too, and they don’t have the staff and resources to help everyone. Other families are in crisis, and then they remind me, ‘Aimee, you’re in crisis too,’ and they’re right. Those stays are just pure relief. When I come here, I can put Cameron’s care to one side because I know he’ll be looked after. Without those stays, I think I would have lost the plot by now.”
“And Cameron loves it too. He needs a break from his usual home life sometimes, and he thinks it’s a holiday when he comes here. He enjoys the freedom and independence, which are so important for a teenager. I see a real change in his behaviour when he comes to the hospice. It’s wonderful to see, and it’s such a relief for me. I know that he’s safe and I can relax. I get to spend time with Anwen too, just the two of us, last time we went to play mini golf. Other families might take days out like that for granted but for us they are so precious.”
“I can’t even begin to imagine what it would mean for my family if the support we currently receive was no longer available. Honestly, I don’t know how we’d cope. We’d be left feeling trapped and helpless, just like we were before.”
Your donations transform lives. Will you help us reach every family that needs us?
“Whatever you can give, thank you so much from me, Cam and Anwen. Without Tŷ Hafan we’d be utterly lost with no support whatsoever. Thank you for caring.”