Children's Hospice Week, is taking place between the 23 - 29 May and is the UK's only awareness raising and fundraising week for children with life-limiting conditions and the services that support them.
This year the campaign will put families first to improve public understanding of what life is really like for families caring for seriously ill children. Tŷ Hafan is asking the public to make a short life a full life by ‘doing what they do best’ for Children’s Hospice Week.
As part of Children's Hospice Week, Tŷ Hafan are encouraging individuals and businesses to join team Tŷ Hafan by 'doing what they do best' and fundraise to help make a short life a full life for Children in Wales.
We all have something we do best – something that can raise money for Tŷ Hafan this Children's Hospice Week. Put your thinking cap on and ask yourself: What’s my best?
Your fundraising, no matter how small, will make a big difference to the families we support.
fun at the hospice
Look at how much fun we had at last year's children's hospice week party held at the hospice.
Louis Murdoch is one of 266 life-limited children currently benefitting from Tŷ Hafan’s care and support.
Three-year-old Louis has Spinal Muscular Atrophy (SMA) type 1. SMA is a genetic neuromuscular disease affecting the nerves responsible for muscle function.
His mum, Michelle, said: “We had never heard of SMA, but it is the leading genetic cause of death of infants and toddlers.
“Most babies with SMA type 1 don’t get to see their first birthday. Louis is our little superhero, but we know that every single day with Louis is a gift and Tŷ Hafan has helped us make so many precious memories.”
Louis was diagnosed with SMA at five months old. The diagnosis was a complete shock to his whole family.
“It changed our lives completely,” said Michelle.
“We were then referred to Tŷ Hafan and told all about the wonderful things they could do for Louis and us. Louis has had Tŷ Hafan outreach play and music therapy at the house and he has benefitted so much from both of them.
“At first, Louis was very wary of people he didn’t know, but he soon got to know the play worker and music therapist and absolutely loved all of his sessions.
“We have also had a few stays at Tŷ Hafan as a family. Louis has a younger brother, Arlo, and there are always lots of activities to do throughout the day that Louis and Arlo can both enjoy. We are always made to feel so welcome.
“Tŷ Hafan really makes a difference to our lives and to many other families like ours.”
We would love people to get involved and share pictures on social media 'doing what they do best', using #teamtyhafan and #childrenshospiceweek