Mum of Rutland schoolboy, Charlie, speaks on life after long-awaited kidney transplant
A mum whose schoolboy son has had a kidney transplant after a three-year wait hopes he can begin to reclaim some of his lost childhood.
Melina said she feels a sense of relief after her 15-year-old son Charlie, of Oakham, was finally given a chance to live a normal life - something he struggled with due to a life-threatening chronic kidney disease.
Charlie was born with the condition but endured years of misdiagnosis until he was eight.
At the age of 11, he suffered a kidney failure and was put on dialysis.
That same year, in December 2021, he was placed on the NHS transplant list and has been waiting for a donor ever since.
In March, he under went the long-awaited transplant, which Melina described as a ‘truly incredible gift’.
“When we got the call, having waited for so long, we were in disbelief,” said Melina. “It all seemed very surreal.
“We now have the luxury to think about the future, which most of his peers would take for granted. Life for Charlie has revolved around dialysis, medical appointments, diet and fluid restrictions.
“Children with kidney disease don’t have access to a normal childhood - they miss out on so much - and Charlie’s transplant doesn’t mean he is better.
“He will carry the emotional trauma for the rest of his life and we also don’t know how long his kidney will last – we hope he will get years and years of life, but you never know.
“But Charlie has the right attitude. He said he will make every single day count.
“He was euphoric about being allowed to live a life away from dialysis.”
While Charlie was awaiting a donor match, he had dialysis every night for 10 to 12 hours and suffered a number of infections.
Charlie was also taken off the NHS transplant list for a time after becoming critically unwell with a rare autoimmune condition.
Melina said that life after the transplant has been far from easy, with Charlie experiencing complications related to his blood.
She said they need to continue being cautious as Charlie is susceptible to infections - especially within the first year.
Despite this, Melina said his determined spirit remains unwavering.
“Prior to his transplant, some hard decisions were made about his care, and as such, we encouraged Charlie to make a wish list,” said Melina.
“One of the items on that list was to take kidney disease and organ donation to parliament, so just eight weeks after receiving his transplant, he delivered a very personal, hard-hitting speech.”
In attendance were peers, MPs, medical professionals, and the Secretary of State for Health and Social Care, Wes Streeting, who described Charlie’s speech as ‘the most inspiring’ he had heard in a very long time.
During the speech last month, Charlie said he doesn’t remember his life before the kidney disease and dialysis and his childhood memories were filled with feeling poorly, being in hospital and undergoing life-saving treatments.
“I’m one of the lucky ones though,” he said. “I have been handed back my childhood. I can now start to explore what my new normal looks like.
“I don’t know how long this will last because a transplant isn’t a cure. I’ll always live with kidney disease.”
Charlie is determined to continue raising awareness about the importance of organ donation and the impact kidney disease has on children.
He had previously shared his story at Peterborough Cathedral and on Saturday, June 28 he will be holding another fundraising coffee morning at Oakham’s Congregational Church, between 10am and 12pm.
Charlie hopes to raise £500 to reach his £20,000 for Kidney Research UK - a cause he began fund-raising for three years ago.
Melina said she is excited to see Charlie hopefully try the things he has always wanted to do, such as swimming in the sea again, playing rugby or taking up judo.
“It’s incredible to see colour in his face again,” she added. “It’s been hard because we have seen him miss out on so much, but we are also incredibly grateful for the donor family for giving us this opportunity.”
