Johnny Howley's 3 Peaks Challenge
A father from Greater Manchester, whose six-year-old daughter has the rare autoimmune disease scleroderma, has raised more than £7,000 for SRUK to help fund research into the condition
Johnny Howley, 35, from Bury, was inspired to fundraise after doctors confirmed his daughter Paige had the condition, then aged three. Scleroderma occurs when the body’s immune system becomes overactive and begins to attack healthy tissue, causing hardening of the skin and, in some cases, other organs. Likely causes of the condition are still unknown, treatments are limited and there is no cure.
Johnny says: “We noticed a small white mark on Paige’s forehead when she was three, but the GP said it was likely to be a birthmark and nothing to worry about. We went on holiday shortly after that and by the time we came home the mark had tripled in size. We were lucky to have private health insurance, so my wife and I used that to get it investigated quickly. We were told by doctors a few weeks later that it was localised scleroderma.
“Paige was given steroids for a number of weeks followed by methotrexate for a few years. Although the scleroderma has spread from Paige’s forehead, down through her eye to her nose, the methotrexate has helped stop it progressing. She’s recently been taken off it because it’s quite a serious treatment for an adult never mind a child, so we’re now waiting to see what happens. The care she receives at Royal Manchester Children‘s Hospital is brilliant, but there just aren’t enough effective treatments available, especially for children.”
In a bid to fund research to learn more about the condition and find more treatments, Johnny set up a fundraising challenge last year to conquer Ben Nevis in Scotland, Scafell Pike in the Lake District and Snowdon in Wales within 24 hours. Following a gruelling training plan – and some postponements along the way due to the COVID-19 pandemic - Johnny, along with six friends, completed their 3 Peaks challenge on Saturday 31 July 2021. Together, they have so far raised £7,030 with all donations going to SRUK.
Speaking about the challenge, Johnny says: “It was exhausting, but reaching the top of Snowdon felt amazing. Not only has this helped me and the rest of the lads lose weight and get fit, it’s also great to know the money we’ve raised will go towards finding better treatments for scleroderma and keeping the charity running.”
Sue Farrington, SRUK Chief Executive, said: “Congratulations to Johnny on his physical and fundraising achievements – climbing all three peaks in 24 hours is no mean feat! On a personal note, I’m glad to hear Paige is doing well and wish the family all the best with her treatment.
“As a charity, we’re so grateful to Johnny and our other amazing supporters who, through their dedicated fundraising, help us support those affected by scleroderma and fund vital research to find new treatments and, one day, a cure.”
SRUK is the only charity solely focused on improving the lives of people with scleroderma and Raynaud’s in the UK through information, support and ground-breaking research.
To donate to Johnny’s JustGiving page, visit www.justgiving.com/fundraising/johnny-howley