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 (May 23 – 29).
Children’s Hospice Week is the national awareness and fundraising week for children with life-limiting conditions and the services that support them and their families.
We are appealing to individuals to join Team Tŷ Hafan so we can continue providing vital care to life-limited children and their families from across Wales.
Alison Stallard, Tŷ Hafan’s Head of Regional Fundraising, said: “We all have something we do best – something that can raise money for Tŷ Hafan. Put your thinking cap on and ask yourself: What’s my best? Is it baking a batch of cakes and hosting afternoon tea, or holding a quiz night at work? Whatever you do best, we need you to embrace your fundraising passion and join Team Tŷ Hafan today.”
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.”
Tŷ Hafan relies on the generosity of the public to offer its unique service to life-limited children and their families. The charity is asking individuals to do what they do best and fundraise for Tŷ Hafan this Children’s Hospice Week.
Alison added: “Team Tŷ Hafan are looking for fundraisers who push themselves to the limits, use the power of creativity to do good, and take on hair-raising challenges – all to raise money for children with short lives in Wales.”