Teenager inspires cycling hero dad on verge of kidney donation

Ben Speare, 50, took on the cycling challenge with a friend, and raised £4,500 for Kidney Research UK to support work to help people like his daughter Scarlett, who will soon need dialysis or a transplant to keep her alive.

Scarlett was diagnosed with kidney disease when she was just five. Her parents had taken her to the doctors when she was experiencing headaches and she was referred to Great Ormond Street Hospital, where the family received the diagnosis. Four years later doctors also found she had type 1 diabetes.

Ben said: “Given the challenges Scarlett is facing – two diseases and the prospect of major surgery – she has dealt with it amazingly well. She’s a great kid. She’s funny, intelligent and brilliant to be around. I want to do whatever I can to help her.”

For several years, Scarlett’s health was managed through frequent trips to hospital, medication, diet and exercise – she is a keen rower. However, her kidney function has significantly deteriorated in the last year. Once her kidneys have failed, only a transplant or regular dialysis treatment will keep her alive.

Scarlett’s mum and dad can’t donate a kidney to Scarlett directly as tissue matching has found they aren’t compatible, but, dad, Ben, has been approved to donate via the shared scheme, which pairs donors with suitable recipients when they can’t donate directly to their loved one. Through this it is hoped that Scarlett will receive a kidney from somebody else while Ben’s kidney will go to a stranger.

Ben said: “It is likely that while we wait for a match, Scarlett will need to have dialysis to keep her alive. That will be a difficult adjustment, but we are working with the doctors and nurses to try and reduce the impact on Scarlett’s life.

“Planning ahead, we have opted for dialysing at home each night, so she can continue with school and do the things she enjoys. Whatever happens, we know Scarlett will have chronic kidney disease for life. Even after a transplant, she will likely need another in her lifetime. That is the reality, but we take the positives in life and focus on what we have.”

Ben was able to pause his thoughts about surgery by focusing on his cycling challenge and his friend Andy Wiggs willingly stepped up to join in. The pair rode from St Malo to Nice, incorporating the dizzyingly high Mont Ventoux – 1,912 metres above sea level – which is often included in the Tour de France.

Ben said: “We had some epic weather. Really hot days and some unbelievable thunderstorms with sideways rain and gale force winds nearly blowing us off the mountains!

“We finished on the iconic Promenade des Anglais in Nice. I didn’t want the experience to be over but I’m proud of what we managed to achieve. It’s amazing to receive so much support, that has meant a lot to us.”

The family are sharing their story to encourage people to think of those affected by kidney disease, and have thrown their support behind Kidney Research UK’s Christmas appeal.

Lucy Sreeves, executive director at Kidney Research UK, said: “There are around 1,000 children in the UK living with kidney disease, and many are facing the prospect of life-changing treatments like Scarlett. Through research we are making a difference to kidney patients and their families and we’re so grateful to Ben and Andy for their support. We appreciate every penny people are able to spare in order to give the gift of research and save more lives from being devastated by kidney disease.”

To make a donation to Kidney Research UK’s Christmas appeal, visit: www.kidneyresearchuk.org/scarlett