Mum’s desperate plea for organ donor to save eight-year-old son with chronic kidney disease
The survival of a young boy is riding on the selflessness of a stranger as his mum makes a desperate plea for a kidney donor
A stranger could save the life of an eight-year-old boy whose health is rapidly deteriorating.
Megan White’s world was “flipped upside down” after her son’s routine blood tests turned into a heartbreaking ordeal three years ago - revealing he was suffering from chronic kidney disease, prompting a public appeal for a donor.
Leo, who attends Penbridge School in Fratton, was diagnosed with the disease in December 2022 after his mum initially suspected he had diabetes due to his insatiable thirst.
The 26-year-old said: “It was a few weeks before Christmas. He went in for a routine blood test. A day later, I was being told I had to go to QA with him. We had no idea what was going on and initially thought it was for more blood tests but he had to have an x-ray on his kidneys and other tests.
“We had to panic buy a hospital bag. We didn’t know what was going to happen. It was really scary and the tests showed his blood levels were crazy high so we had to get medication to bring them down and bring some back up.
“We were told the only way he would be a healthy child would be through a kidney transplant but the NHS said he wasn’t poorly enough to have it. Over the last three years, his health has deteriorated - his last tests showed his kidneys were at 13 per cent function so we need a kidney but he is not ill enough to go on the deceased donor list.”
Chronic kidney disease, which is more common in adults, is a long-term health condition whereby the kidneys are unable to filter blood properly which can cause kidney failure.
Leo now has to take 10 tablets a day to stabilise his condition, which will inevitably worsen, with Megan saying their only hope is for someone willing to donate a kidney to come forward.
The average waiting time for a kidney transplant with a living donor is usually three to six months, however once a patient is added to the deceased donor list, it can take between two to three years.
“Looking at Leo, you wouldn’t think there was anything wrong. He won’t be activated on the deceased donor list until he is very very ill, he’ll end up on dialysis at that point until we find a kidney. It’s all a waiting game but we know it’s going to happen eventually.
“It’s a constant worry especially when you can’t see it happening. One day he will be fine and the next he won’t eat or drink. It’s just difficult because it’s the not knowing, but we are always hoping that someone will help but it’s the hardest thing. Not knowing is the worst.”
Last Easter, Leo became seriously unwell due to a reaction to his medication resulting in a two-day hospital stint at QA, before being moved to Southampton General.
In her public appeal, Megan, who is being supported by Guy's and St Thomas' NHS Foundation Trust, described her son as the “most beautiful, loving and energetic little boy” who is desperate to “live a normal life.”
If you are interested in helping Leo, specialist nurses are looking for a donor who is in the A or O blood group, is generally fit and healthy, has a BMI of 30 or below and is under 55.
If you would consider being tested please email specialist nurse Amy Shipperley on [email protected] and a health questionnaire will be sent to you.