Teenager Ellie Pyle, who was diagnosed with a rare genetic condition when she was just eight years of age, has been receiving care from Tŷ Hafan – and now members of her family, and their friends, have taken part in a fundraising challenge to help buy new equipment for our hospice.
Ellie’s nine-year-old brother Marley was one of the group taking part in a climb up Pen-y-Fan in the Brecon Beacons – the highest mountain in south Wales - last Sunday morning.
Despite suffering from Type 1 diabetes himself, Marley completed the climb, reaching the peak of the challenging 886m mountain, helping to raise more than £1,500 for Ty Hafan!
The family raised the money towards new equipment for the den at the hospice. Marley, and a group of 13-year-old Ellie’s other relatives, were accompanied on the challenge by runners from Parc Bryn Bach Running Club, in Tredegar.
They climbed the mountain in Tŷ Hafan t-shirts or in the club’s distinctive green running vests.
Ellie became ill at six months old and was diagnosed with CASK gene mutation, a very rare genetic disorder, when she was eight.
Her mother Sarah Smart was told that she may not live a very long life.
The disease affects brain development, and means Ellie is unable to walk, has poor sight and hearing and suffers epileptic fits and chest infections.
Sarah began to raise money for Tŷ Hafan for all the support she has received and she organised the Pen y Fan climb, which took place on June 30.
David Parry, who is another relative of Ellie and a member of the running club, said the walk had been very successful but hard going!
‘Five runners including myself, took 46 minutes to go up and down – we went at a fair pace but it was well worth while,’ he said.
‘The weather was good in the valley when we started, but by the time we got to the top it was misty and windy and very cold, conditions weren’t very good.
‘Marley did brilliantly! It was the first time that he’d been up Pen y Fan – and Ellie came along to see us all off as well.
‘It was a good adventure, everyone really enjoyed it!’