Teenager Joe Elson walked 21 miles from Coniston to Barrow in memory of his sister Connie who was cared for by Derian House Children’s Hospice.
The 13-year-old, of Cark, South Cumbria, raised so much money for his chosen charities on his walk that he earned himself the Pierce Armstrong Memorial Trophy award and was presented with the trophy at a ceremony in November.
Joe’s sister Connie suffered from Metachromatic Leukodystrophy (MLD), a degenerative neurological condition, and passed away aged 13 in July 2022.
Joe also inherited the condition, but was able to access a gene therapy trial in Italy which involved chemotherapy and a transplant and remains well.
Derian House was there for Connie, Joe and their parents throughout her short life – giving them opportunities to make precious memories as a family.
In his latest walk, Joe and his family raised £4,500 for Derian Children’s Hospice – and Joe has overall raised a whopping £17,000 for other charities since he began fundraising.
This is the fourth time that Joe has hiked the 21-mile challenge – completing his first ever walk at the age of seven.
His sister Connie also raised thousands of pounds for charity during her short life, and received the same trophy as Joe in 2017.
Joe, who attends Cartmel Priory School, said: “I am glad I could support and raise funds for charities who have helped our family so much over the last few years, and I’m glad that money will go on to help other families like mine. I want to keep on raising as much money as I can to say thank you. I was so happy to win the Pierce Armstrong Memorial Trophy and I really enjoyed the awards evening.”
Derian House Children’s Hospice continues to support Joe and his family.
“Derian is one of the charities that have really supported us over the last few years – they are so important to families like ours and play a vital role that isn’t met anywhere else.” Said Joe’s mum, Nicola Elson.
“When Connie became really poorly the Derian play specialists would come to our house and spend time with her – painting, singing, reading and generally just having a nice time. We also stayed at one of the Derian holiday lodges in Ribby Hall. We had a great time and made lots of lovely memories.
“When Connie passed away we were able to stay at Derian with her in one of the Sunflower Rooms, which allowed us just a little more time, something we all very much cherished and appreciated.
“Connie and Joe adored each other,” continued Nicola.
“Connie was diagnosed with Metachromatic Leukodystrophy around the age of five. Joe was two years younger than Connie, but as Connie became more poorly her needs were always very much at the forefront of his mind. He’d sing to her, tell her jokes and read stories. He was always helping however he could. He never complained and has always been mature beyond his years.
“As Connie’s condition was genetic, Joe was tested a few weeks after Connie’s diagnosed and it was confirmed he had also inherited the condition. As Joe was diagnosed before symptoms presented, he was able to access a gene therapy trial in Italy, which involved chemotherapy and transplant. He remains very well.
“We are incredibly proud of Joe and all that he has done. He has always been a very caring and thoughtful young man.”
Ann-Marie Fishwick, Community Fundraiser at Derian House, said: “What an amazing young man Joe is! We are in awe of what he has achieved and are very grateful for the money he has raised for Derian House.
“We couldn’t do what we do without superstars, like Joe, who go above and beyond to raise money for families just like his.”
Derian House Children’s Hospice cares for more than 400 babies, children and young people as well as their families. The Chorley-based charity will cost £6million to run this year, and only receives a small percentage of this from funding.