Charlie's story: living with nephronophthisis

Twelve-year-old #KidneyWarrior Charlie won't let renal failure stop him from living an active lifestyle and raising funds to support the kidney community.

"Four years ago, I was told I had nephronophthisis which had also resulted in renal bone disease and hypertension. I couldn’t even pronounce it, let alone understand what it was! I am now 12 years old and have end stage renal failure (ESRF). I am on dialysis for 10 hours daily and must take a lot of medication all of which helps me to survive until I can get a kidney transplant.

"I had always enjoyed an active lifestyle, playing outside with my friends, riding my bike, swimming and kayaking. I was a member of a judo club, a qualified scuba diver and I played rugby for a local team. A highlight I will never forget was playing in the finals of a regional rugby competition at Leicester Tigers Rugby Club."

  • Charlie Frieland - dialysis
  • Charlie Frieland - bike 2

"I try to eat well and keep healthy by exercising"

"Then it all stopped.

"As my kidneys failed, I became ever more fatigued, struggling with sickness and headaches. With my bones hurting, even going to school, which I absolutely love, became very difficult. I now spend a lot of time in a wheelchair and am connected, via a peritoneal catheter, to a dialysis machine every night. I cannot run around anymore, and rugby is something I can only dream of returning to one day though in reality I doubt this will ever happen.

"My mum says she’ll always tell me the truth about my treatment because it’s my body and from very early on I have been encouraged to fully understand my condition. It’s important for me to know what I can do to support myself, taking my medication and understanding why I’m taking it. I try to eat well and follow a strict renal diet and keep healthy by exercising and helping to set up my dialysis machine."

"We carried out a kidney transplant on a drawing of me using strawberry laces and Haribo sweets"

"We talk a lot about mental health at home and if I have any worries, I know the best thing to do is talk about them. We even carried out a kidney transplant on a life size drawing of me using strawberry laces and Haribo sweets which was great… except I forgot to reconnect the bladder! I like to ask questions at hospital appointments and because of this my consultant and the renal team are very honest with me too and they speak to me like a grown up. They are all really nice people, even though I don’t like what they have to do to me sometimes."

  • Charlie Frieland - drinking
  • Charlie Frieland - with dog

Taking on a #KidneyWarrior cycling challenge

"Staying positive is a way of taking control but it’s not always easy so when I feel sad, I try hard to find or do something positive. This is what helped launch me into doing my 100km #KidneyWarrior cycling challenge.

"After a recent change in treatment, I felt very poorly. This was the first time in four years that I felt angry about my CKD. However, I’m determined not allow CKD to ruin my life, so I set myself the huge challenge of cycling 100km in a month and raising some money for charity at the same time. I chose Kidney Care UK because they offer invaluable advice and support to people suffering from kidney disease and I wanted to help them to support other people who were struggling with their diagnosis, treatment, mental health or even financially.

"I asked my parents to help me set up a Charlie's 'Kidney Warrior' 100km Cycle Ride Just Giving donation page online. Writing up the reason I was doing the bike ride was a bit of a milestone for me because I’d never spoken openly about my condition, especially to my new friends at secondary school, and now everyone would know.

"I set myself the target of raising £200 which I honestly didn’t think I’d achieve. By the time I went to bed that night the target had been significantly exceeded. I was delighted but a little daunted by what I’d committed myself to.

"The messages from supporters really help me to focus on covering as much distance as possible"

"I decided that I wanted to try and get the bulk of the cycling completed during half term because I know that I’m normally incredibly tired after school and I must rest all weekend to be able to get to school the next week. Before the start of each ride, I check my Just Giving page and the messages from supporters really help me to focus on covering as much distance as possible. I find the bike rides hard and have to take regular rests and rehydrate a lot and I’m always exhausted afterwards.

"The generosity of people, many of whom are strangers, and all the kind comments have been just overwhelming, so I’m more determined than ever to do this, not just for Kidney Care UK but for myself as well."

Charlie Frieland - bike 1