Sarah Emmott needs a kidney transplant from a live donor, as the six-year-old has been battling a severe genetic kidney disease and other complex health problems, since she was born.
The schoolgirl, who has never eaten any food in the normal way, has to be fed intravenously through a pump. She also suffers from chronic daily pain and has spent much of her young life at Leeds General Infirmary and Martin House Hospice.
Mum Ellie, 46, said: “Sarah has been through hell and back and has also experienced a lot of bad luck with her health. She doesn’t eat. Nothing, not even a crumb. She’s never eaten all her life.
“She is on a pump feed and often we carry it around attached to her, it’s like a leash. She has soft bones from her renal disease and has had broken legs and ribs.”
Despite her ordeal, Sarah never fails to brighten up the room with her smile and her parents Ellie and Andy, who have moved from Leeds to Tadcaster, hope that a last ditch attempt to appeal for the correct tissue match, might help to save her.
Sarah needs a live kidney, which means it must come from a living person who can donate one. Her parents have been tested and, although they are the same blood type, they are not tissue matches.
“It won’t be long now until she goes into kidney failure and needs an organ donation,”
She said that the family has been making the most of her ‘well’ period and doing things that she could never experience before.
“She is enjoying school and is very popular. She is finally living a life and really having fun with friends of a similar age,” said Ellie.
“Her kidneys are running at around 10 per cent function, really she should be having dialysis in hospital three to four days a week but due to her complexities, we are keeping her off this and getting on with life the best she can, until the day comes that her body simply cannot cope anymore.”
Until recently, Sarah has lived much of her childhood within the walls of the Leeds General Infirmary, often spending months on end in hospital.
Last year Sarah captured to hearts of judges at the Children of Courage Awards, when she was honoured with the Special Recognition award for under 12s.
Ellie, who is also mum to Dane, 15, says: “Sarah is an extraordinary little girl, she gives so much back to everyone. She is always happy, singing songs and ever so loving.
“She always thinks of others before herself. It just doesn’t feel quite real that underneath that beautiful happy smiley face there is a seriously poorly child within.”
If a live donor is not found, then she will be placed on the deceased donor list, while likely spending months on end in hospital dialysis.
“The pain she has had in her short life and she still smiles almost all of the time. She is infectious - extraordinary is what I call her. People who meet Sarah are almost spell-bound by her. She might be tiny but her personality is huge and she makes up for that,” added Ellie.
Any interested donors can find out more about being a live donor via email: [email protected] They will be sent a reply with everything they need to know.
More details: https://www.leedsth.nhs.uk/a-z-of-services/kidney-transplantation/Donor factfile
Across the UK, more than 1,000 people each year donate a kidney or part of their liver while they are still alive to a relative, friend or someone they do not know.
The most commonly donated organ by a living person is a kidney. A healthy person can lead a normal life with only one functioning kidney and therefore they are able to donate the other to help someone in need of a kidney transplant.
Why do we need more living organ donors?
In the UK, around 5,000 people are in need of a kidney transplant to transform their lives, and hundreds of patients die each year waiting for a transplant due to a shortage of organ donors.
The average waiting time for a kidney transplant from someone who has died is more than two and a half years. For some ethnic groups and people for whom it is difficult to find a compatible donor, the wait is even longer. Sadly, some people die waiting.