A mother is pleading for help as her youngest son waits for an organ transplant.
Sarah Beale, who lives with her family near Watton, said both of her sons have been diagnosed with an ornithine transcarbamylase deficiency which stops the body breaking down protein and causes high ammonia levels.
Most boys with the condition are "lucky to survive 48 hours after birth".
13-year-old Alfie received his liver transplant when he was three years old and now has a much better quality of life.
But 11-year-old Harry is still on the waiting list and struggling to get by.
Harry must take 36 medicines a day and eat a strict low-protein diet.
Sarah said: "This has really affected him mentally - he has even hurt himself and refused to take meds.
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"At his assessment, our son said he was excited for a transplant as it will change his life forever.
"He will be able to eat food he has never tried like KFC or a burger and he won’t be in and out of hospital."
Sarah said the family can never travel more than an hour from home and always keep bags packed by the door in case they get a call that a donor has been found.
She hopes to use her experience to raise awareness of the importance of organ donation.
"I was naïve to transplants before this," she explained. "If our story can get one person to register on the donor list it’s helped."
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A spokesman from NHS Organ Donation said: "Last year only 32 people from Norfolk went on to become an organ donor after their death, yet 59 people from the county received transplants and 46 are still currently waiting for a transplant.
"Each donor has the potential to save up to nine lives and improve up to 50 lives if they donate tissue too, which is why every potential donor is so precious."
The government brought in an opt-out system in May 2020 but family members are asked before a donation takes place, so people still need to make their wishes known while they are alive.
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