Rutland teenager waiting for life-saving kidney transplant encourages families to speak about organ donation this Christmas

A teenager waiting for a kidney transplant is urging families to speak about the gift of organ donation this Christmas.

Charlie, 14, was diagnosed with life-threatening chronic kidney disease aged eight and went into kidney failure three years later.

Sunday (December 1) marked three years since he was first put on the NHS transplant list - but still no match has been found.

Charlie, a pupil at Catmose College in Oakham, said: “A new kidney would allow me and my family to discover our new normal. A normal away from worrying about what tomorrow might bring and from daily treatments that are taking their toll on my body."

While waiting for a transplant, Charlie has been undergoing dialysis, which he describes as ‘like a washing machine that cleans my blood’.

Charlie had dialysis every night for 10 to 12 hours but suffered a number of infections. By early last year his body was struggling to cope with treatment.

He said: “I’ll be honest and say that I was struggling to see the point anymore. My life just seemed to be about treatment and hospital appointments.

“I could no longer do anything my friends did and I was missing so much school.

“I was just exhausted from feeling so poorly all the time. I hated it.”

His treatment was switched to home haemodialysis, which his mum, Melina, helps to administer four nights a week for eight to 10 hours a night.

Despite the grueling medical procedures teamed with lifestyle changes Charlie has made, a life-saving transplant is the only long-term solution.

Charlie, who was taken off the NHS transplant list for a period last year after becoming critically unwell with a rare autoimmune condition, has spoken with his parents about his own organ donation wishes and encourages families to make time for those difficult conversations too.

Melina said: “Your child discussing with you their own organ donation wishes and funeral wishes are conversations no parent wants or expects to have, yet that’s been our reality.

“At 14 years old, he is now a young man. His childhood is behind him.

“It breaks my heart to know that his childhood memories will be that of treatment plans, emergency hospital admissions, and dealing with the emotional burden of waiting for the call.”

Charlie’s health issues have spurred him on to raise money for charity and awareness about kidney disease and organ donation too.

On Sunday he shared his story at the Peterborough Cathedral advent service and next year he will be part of a project to raise awareness in parliament.

Melina said: “A lot of people ask him ‘why you?’ He tells them ‘why should it be anyone else?’.

“He deals with the cards he’s been given.

“As a family we keep positive and try to see the best in every day.”

For more information on organ donation, visit: https://www.organdonation.nhs.uk.

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