A 9-year-old girl has ‘not had a life’ while she has waited 53 months for a life-changing kidney transplant.
Amelia Bourne, from Thornaby near Stockton-on-Tees, has to have 10-hour dialysis sessions every day during her five-year wait for a new kidney.
Grandmum Shell Mount, 49, issued a desperate Facebook appeal for a donor last year and still, a successful match has not been found.
Amelia has nephronophthisis, a rare kidney disease that leads to kidney failure and has left her kidneys ‘dead’.
As a result, Amelia endures 10-hour overnight peritoneal dialysis, which involves a catheter inserted in her abdomen to remove waste and excess fluids from her body.
This treatment and a ‘shed’ of 13 other medications mean Amelia suffers from ‘high blood pressure’ and ‘really bad’ bones.
Shell, who is her legal guardian, told Metro: ‘It is a struggle and it is really hard.
‘There is a risk if we do not get this kidney it will bring more bone issues
‘She just wants to be a normal child. She just wants to go on an aeroplane and have a normal life.
‘She cannot go swimming or do school overnight trips.’
Amelia is one of 145 children waiting for a kidney transplant in the UK.
More than 6,500 people are waiting for a kidney transplant as a whole.
In 2023/24, 418 people died while on the waiting list for an organ transplant.
Shell thought her granddaughter would be saved when she found out her kidney was a perfect 1.1.1 match for Amelia.
But testing revealed a hole in one of Shell’s kidneys, ruling out a potential donation.
‘I was telling them to take it and they wouldn’t,’ she added.
‘I’ve had a life, but she hasn’t.’
Amelia has been waiting on the on-call transplant list for 53 months. In that time numerous family and friends followed Shell’s appeal to get tested but no others have been a match.
The girl is beginning to desperately ask when she is going to get ‘this stupid kidney’, while her ill-health and dialysis routine means she is cannot go on valuable school trips.
Shell said: ‘If she gets a kidney it would just be amazing. It would be a change to the whole household.
‘She would get the chance to live a childhood. You cannot get your childhood years back.’
In the meantime, Amelia is being treated for her condition at Royal Victoria Infirmary Hospital in Newcastle.
Her grandmother said that while their care is ‘outstanding’ she cannot help but be frustrated at the enormous wait for a life-changing kidney.
In her Facebook post in March last year, Shell said: ‘My gorgeous granddaughter is fed up now of 6 years doing this journey.
‘This girl just takes everything in her stride since day 1 but now she’s getting fed up as she’s 8 years old and shouldn’t have had to wait all this time for a kidney.
‘So whether you are young, old, male, female, black or white it doesn’t matter any kidney will do if it’s a match. I beg you please get a blood test to see if you’re a match.’
The family are reissuing their appeal as another year has gone by without a successful donor.
Anthony Clarkson, Director of Organ and Tissue Donation and Transplantation, at NHS Blood and Transplant said: ‘There are not enough donated organs which sadly means some people wait years for a transplant or never receive one at all.
‘There are thousands of people, including hundreds of children, waiting for an organ transplant in the UK right now, and most of them need a kidney transplant.
‘We urge everyone to confirm their decision to be an organ donor on the NHS Organ Donor Register and tell their family they want to save lives after their death.’
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