Your kind donation will make sure that no family in Wales has to face their child’s short life alone. Thank you for being beside them.
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Our research shows that for every child and family in Wales we can support, there are nine more that we simply cannot yet reach.
Now, in our 25th anniversary year, we are more determined than ever to reach every family who needs us, because when a child’s life will be short, no family should have to live it on their own.
Will you help us reach every family that needs us?
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We don’t know how much more time we’ll have with Alice, but we do know that whatever we have to face, we won’t face it on our own. Tŷ Hafan will be right by our side, thanks to you.
- Hannah, Alice’s mum
Our research shows that for every child and family in Wales we can support, there are nine more that we simply cannot yet reach.
Now, in our 25th anniversary year, we are more determined than ever to reach every family who needs us, because when a child’s life will be short, no family should have to live it on their own.
“When Alice was born, she started having seizures straight away and was rushed to intensive care before we’d even held her.
“I’ll never forget being told that some babies with hydranencephaly don’t survive for more than a year. I just couldn’t believe that I was being told that my little baby Alice was going to die before me.
“But Alice is a fighter. She’s 10 years old now and since the day she was born she’s amazed us with her spirit, her determination and her love for life. I might be biased but I think she has a beautiful smile.
“She uses a wheelchair and isn’t able to walk, talk or feed herself. Some days, when Alice is really unwell, are unbelievably hard. We try to focus on having as much fun as possible together, even though we never know how much longer we might have.
“Last year, we all went on the holiday of a lifetime together to Disneyland. Alice, her sister, Sophia and little brother, Jack all wore matching t-shirts and Alice’s eyes lit up when she met Mickey and Minnie Mouse; they are her favourites!
“It was only two weeks after we got back that Alice started having seizures. She was struggling to breathe. She was rushed to hospital and they had to put a tube in her throat to help her.
“Alice was in hospital for 6 weeks. On two occasions the doctors tried to remove her breathing tube, but both times Alice just couldn’t breathe by herself.
“That’s when the doctors told us the news we spend our lives hoping we won’t have to hear. They told us Alice wasn’t likely to live for much longer.
“When you have a child that isn’t going to live a long life, you have to think of things that no parent should ever have to think about. Like where you want your child to die. We’ve always known that when the time comes, that place will be Tŷ Hafan and we started making arrangements to take her to the hospice.
“Just when we’d started to give up hope, a consultant suggested one more treatment to try and it worked. Alice started to breathe by herself again and started to recover slowly but surely.
“All told, Alice was in hospital for three months. That was three months of spending every day with Alice at Alice’s bedside, trying to keep things as normal as they can ever be for Sophia and Jack. It was the hardest three months of our lives, but we never felt alone – Tŷ Hafan were with us, every step of the way.
“I can’t believe I’m able to tell you that Alice is back home now, and she’s doing great. She’s even been back in school, catching up with her friends and teachers.
“We don’t know how much more time we’ll have with Alice, but we do know that whatever we have to face, we won’t face it on our own. Tŷ Hafan will be right by our side, thanks to you.”
Hannah, Alice’s mum
can provide reassurance and comfort to parents reeling from a recent diagnosis.
can light up a seriously ill child’s life with fun and laughter in a play session.
can provide emotional support to a sibling to help them cope with the death of their sister or brother.
can provide a listening ear and practical support to a family trying to adjust to their child’s worsening condition.