The father of a 16-year-old with a rare genetic condition took part in Tŷ Hafan’s Taff Trail Cycle Challenge to raise funds for the charity that has been a lifeline for his family.
David Lewis from Leckwith and his team – the ‘Tesco Trailers’– joined 280 cyclists for Tŷ Hafan’s annual fundraising event along the picturesque route from Brecon to Cardiff.
The father-of-three tackled the Half Taff Cycle Challenge, starting from Merthyr Tydfil, to thank Tŷ Hafan for supporting his daughter, Sophie, and his family since 2004.
Sophie is one of only around 50 people in the UK to be diagnosed with CDKL5 – a rare genetic condition that results in seizures and severe developmental issues.
Her condition requires 24-hour care and she is unable to walk or talk. Despite her difficulties, Sophie brings a great deal of happiness to her family and the staff at Tŷ Hafan love to spoil her when she visits the hospice in the Vale of Glamorgan.
Looking back at Sophie’s early life, her mum, Jane, said: “Sophie was born on 26 June 1999 and it was the happiest day of my life. My pregnancy was normal but the birth was horrendous. I was in labour for three days and then ended up having a C Section.
“Sophie did not need any special care and we came home with our little bundle of joy and enjoyed a blissful 15 weeks. Sophie, in those early weeks, was a wonderful baby. She fed well and slept well, everything was bliss. I can honestly say I had no concerns whatsoever.”
But when Sophie was 15 weeks old, out of nowhere, she suffered her first seizure.
“The day she had her first seizure changed me completely. I can honestly say I’m a different person now,” said Jane.
“The fear grips you inside. It was the first time I had seen anyone have a seizure and I was watching my daughter go through it. We were in the car and she was in her car seat asleep at the time. I was screaming at my husband and we drove straight to the hospital.
“We arrived, and when we were called in to see the doctor, she started fitting again in my arms. Needless to say we were admitted straight away, and we made that hospital our home for the next four months.”
Over the following days, Sophie’s fits continued. And during one day, she suffered more than 50 seizures.
“Every test came back as normal so, because of this and being young and naïve, I just assumed they would get her medication sorted and we would get home and enjoy things again,” said Jane. “Little did I know the seizures would still be dominating our lives 16 years later.”
Sophie’s referral to Tŷ Hafan couldn’t have come at a better time. The couple also had their two-year-old son, Thomas, to care for and were in need of additional support to help with their daughter’s complex needs.
David said: “Tŷ Hafan has been incredible. It has been hard at times, but their support makes life a lot easier.
“They look after all of Sophie’s care needs when we visit so we can have a rest and do normal things like go out for a meal or go on holiday.
“Sophie has a fantastic time at Tŷ Hafan. She loves the sensory room and the hydrotherapy pool and our other two boys love it there as well.”
Dave, a maintenance worker at Tesco, supports Tŷ Hafan whenever he can and encourages his employers to help out as well.
“Tesco donated loads of toys to the children last Christmas and I went along with other staff members to help wrap the presents. They also donated a road bike, a Hudl and gift cards as raffle prizes. We’d also like to thank Memory Lane Cakes for donating cakes.
“Jane also volunteers with Tŷ Hafan and helps the fundraising team with admin at Christmas time. We enjoy giving something back as they have done so much for our family.”
David is now looking forward to planning more fundraising activities next year.
“I really enjoyed taking on the Taff Trail Cycle Challenge and was really pleased that I was able to give something back to help other families. We are already planning to complete the full route next year and are even thinking about doing the Tŷ Hafan Three Peaks Challenge next June as well.”
Other parents supported by Tŷ Hafan also took part including Brad and Lauren Watson, Ian Hicks, Andrew Evans, Jennifer O’Brien, Angelo Pucella and Matthew Smith.
The event, organised by the hospice for children in Wales, will ensure Tŷ Hafan can continue to provide care and support for the increasing number of life-limited children being referred to its services.
The event was kindly sponsored by EE and is expected to raise more than £70,000 for the charity. Tŷ Hafan would also like to thank Princes Gate Water and Western Power Distribution for their support.