Children’s Hospice Week, taking place between 11 – 17 May, highlights how services like Tŷ Hafan help life-limited children and their families make the most of the time they have left together.
Since its inception in 1999, Tŷ Hafan – the hospice for children in Wales – has cared for 622 life-limited children thanks to the generosity of the public.
One of the families benefiting from the charity’s range of services is the Watkins family from Merthyr Tydfil.
Back in 2001, Wendy and Adrian were looking forward to the birth of their twins to complete their family and provide their nine-year-old son, Aled, with siblings.
Lewys and Rhodri were born without complications, but a routine screening test when they were 10 weeks old showed they had Duchenne Muscular Dystrophy, a life-limiting condition which causes progressive muscle deterioration.
Naturally the family were devastated and found it difficult to come to terms with the fact that they would ultimately lose their precious boys before they reached adulthood.
“We felt very isolated and alone as a family,” said Wendy.
“We didn’t know anything about the condition but we did learn very quickly how it would ultimately affect the boys and consequently the whole family.”
The family first visited Tŷ Hafan in the spring of 2008, and the charity has supported them ever since.
“I think the biggest thing that Tŷ Hafan gives the twins is confidence,” said Wendy.
“They are really quiet and sometimes don’t say anything at all in certain environments, but at Tŷ Hafan, they are totally different and can be themselves.
“During their last stay, they were playing all sorts of practical jokes. They decorated the Maintenance Manager’s office in One Direction pictures, covered a toilet seat with cling film and tried to make Hayley, our vegetarian Family Support Practitioner, eat meat!
“They have big smiles on their faces when we arrive and they never want to go home. They have such a wonderful time when they stay.”
While the twins make use of the computer room, the teenage den and the hydrotherapy pool, all designed to encourage them to express themselves, mum and dad can relax and spend some quality time together.
And it’s not just when the family are at Tŷ Hafan they feel supported. Their Family Support Practitioner, Hayley Mason, keeps in touch regularly and is always around to help with decisions regarding the boys care.
Wendy is also part of the mums’ group, providing her and other mums with pamper experiences and shopping trips and dad, Adrian, has recently joined the dads’ group – giving them both a chance to unwind and share their feelings with people in the same situation.
Unfortunately, Lewys and Rhodri’s condition has deteriorated over the years and they now need wheelchairs to get around.
Wendy said: “They are now off their feet and we have to do everything for them, like washing and dressing them. They are 14 in September and caring for their needs as they grow into young men can be challenging and quite tiring at times.
“That’s why when we come to Tŷ Hafan and have that break, it means so much. It’s a time to recharge the batteries, catch up on some much-needed sleep (I sleep better at Tŷ Hafan than I do at home!) and have a bit of ‘me’ time.”
Wendy and Adrian know that the future will get more difficult as the twins become more and more dependent on them and the rest of Wendy’s family who also are happy to give support whenever it is needed.
“For the moment we take life as it comes” said Wendy.
“The boys have good and bad days but our philosophy is to try to do as much as we can – for as long as we can”
“It’s good to know that Tŷ Hafan will be there to lend a helping hand along the way.”
Children's Hospice Week is the UK's only awareness raising and fundraising week for children with life-limiting conditions and the services that support them.
Tŷ Hafan is asking the public to make a donation to its Precious Moments Appeal or take part in its Fancy Dress Friday fundraiser on 15 May.