Harry Beale's life "is on hold" as he waits for a liver transplant, as Raveena Ghattaura reports.
The family of a child with a rare disorder said that they go to bed each night with a packed bag by the door in the hopes they hear that a donor has been found.
Eleven-year old-Harry Beale, from Saham Toney near Dereham, Norfolk, was born with ornithine transcarbamylase deficiency.
The condition prevents his body breaking down protein and causes toxically high ammonia levels - and as a result he starts every day by taking 36 medicines.
He urgently needs a new liver from an adult on life support, but while he waits he says he is being robbed of a normal life.
Harry said: "It makes me feel annoyed and agitated.
"When I go out with my friends I have to come back for medicines. I have a low protein diet so I can't eat as much as my brothers.
"So it is quite hard trying to put up with it."
His older brother Alfie was born with the same condition, but had a transplant when he was three years old and now has a better quality of life as a result.
The 11-year-old is still waiting for his and said: "It will mean quite a bit, because it will change how I can eat and it will most likely make me happier."
His mum leaves a bag at the door, as she prays the desperately-needed call will soon come.
"We can't tell him it's next week or three months time... life is on hold," said Sarah Beale, who is encouraging people to sign up to be organ donors.
"People are very misunderstood. They automatically think they are on the organ donation register, but they have to go on the website and register their interest to say they want to be.
"We want Harry to be Harry, and not be in and out of hospital. We just want him to enjoy life and the transplant will mean that."
There are currently 50 people waiting for a transplant in Norfolk and each donor has the potential to improve or save nine lives.
Natalie Ashley, specialist nurse for organ donation at the Norfolk and Norwich University Hospital, said: "We need to increase the number of donors we have every year.
"We still are very short of organ donors, so please just have those conversations because it could be someone like Harry who you're able to save.
"It can't be overstated how precious that gift can be."
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