‘The medical needs of children don’t stop just because it’s Christmas, and neither do we’. That’s the message that Tŷ Hafan, the children’s hospice in Wales, is giving this year, as part of the charity’s Christmas appeal.
For some families in Wales, Christmas is just another day in a medical routine. So the job of Tŷ Hafan is to bring a little bit of magic and festive cheer to families using the hospice, at what sometimes feels like the hardest time of the year for them.
Tracy Jones, Head of Community Services and Partnerships at Tŷ Hafan, said: “Our doors are open 365 days a year and we don’t stop on Christmas Day.
“We continue to deliver critical care and our nursing team are here ready to respond, at a moments notice, to medical emergencies and end of life phone calls. Our Family Support Practitioners are on the end of the phone, dealing with emergencies, even during the Christmas period. We are always there.”
Tracy continued: “Our children deserve a magical Christmas, it’s a time to make memories for families to hold on to.
“Our nurses are on duty throughout the night, delivering acute medical care, so parents and siblings can get a good night sleep, ready for Christmas day. When the children wake on Christmas morning they are surprised with presents and a visit from Santa. Visiting Santa outside of the hospice is sometimes impossible for our children because of their condition”.
“Funds raised via our Christmas appeal means that we can continue to be there 365 days a year. It means we don’t have to stop at Christmas and it means we can bring some magic and smiles to our children and families, giving them the Christmas they deserve”.
In the first few months of her life, little Lilly May from Bridgend was diagnosed with unsafe swallow and Leukodystrophy, a life-limiting brain condition that affects the central nervous system. And earlier this year, she was also diagnosed with type 1 diabetes and is registered blind. Her mum Rhian is Lilly-May’s full-time carer, and looking after her little girl with her complex medical needs is Rhian’s everyday life. That’s why being able to spend Christmas at Tŷ Hafan means so much to both mum and daughter.
“Magical. Amazing. Unexpected. That’s Christmas at Tŷ Hafan. When we spent Christmas there, it was magical and everything beyond. I really wasn’t expecting all the gifts that were given to us. Lilly May loved it. It was like a holiday. My favourite moment was seeing Lily May’s face light up when one of the nurses dressed up as a snowman and as a giant turkey. It made us laugh so much. It really stuck in my mind – as well as all the presents of course!
It really was out of this world for us. If any family wants a magical Christmas, go to Tŷ Hafan!”
Rhian, mum to Lilly May.
Sisters Molly and Emily bring so much joy and love to their mum and dad’s lives, but since they were born, life hasn’t been how their parents James and Sarah ever expected it to be. Both girls were born healthy babies two years apart, but in 2008, Molly, now 14, and Emily, now 12, were separately diagnosed with Rett Syndrome – a very rare condition that affects the development of the brain. Doctors have also explained to James and Sarah, from Fishguard, that it was likely that the girls’ lives would be short.
Struggling to care for their girls is part of every day life for James and Sarah, which is why Tŷ Hafan offers such a lifeline to them at Christmas.
“At Tŷ Hafan, you feel so special at Christmas. At home, you know that everyone else is having a lovely time with their families, enjoying Christmas dinner. And yes, we do have that at home with our families but we still have to do all the usual caring, medications, feeding and changing. So when we come to Tŷ Hafan, the day is a thousand times better because we can do all the nice things like opening presents, singing Christmas songs and watching Christmas films with your children. We let the staff do all the hard stuff and take the weight off our shoulders.
The Christmas we spent here was one of the best we’ve ever had. We got all the one to one interaction with the girls without having to do all the stressful stuff that we do at home every day.
We know that Tŷ Hafan is there whenever we need them. To have that help on Christmas day is so special – better than any other day – because you can actually be a family. I can be a mum, and not a carer”.
Sarah, Molly and Emily’s mum.
“Tŷ Hafan means the world to us. We’d be lost without them. From the cleaners to the nurses and carers up, they’re all fantastic people and we know our girls are looked after. It has a very special place in our hearts.
Christmas is unbelievable. There’s a panto, the girls get taken to Santa’s grotto, ice skating with Santa and all sorts. They get spoilt rotten by the staff.
One of the best things about Christmas at Tŷ Hafan? Sleep! We know the girls are being spoilt rotten and looked after so we can do what we like. They love it here and always leave smiling. Yes, Christmas is good at home, but we’d rather be at Tŷ Hafan!
James, Molly and Emily’s dad.