Shai Winn can't eat, drink or even brush her teeth thanks to a rare condition affecting her throat.
The 10-year-old was born weighing just 3lb and spent the first weeks of her life in a neonatal unit.
Once she was home her mum Lindsey, 41, became worried when the baby coughed every time she was breastfed.
She eventually had to give up her job as a sales manager to care for Shai, who was constantly coming down with colds, chest infections and even pneumonia.
Doctors were baffled until they found a V-shaped pocket in the back of Shai's throat. When she was 18 months old it was confirmed to be a laryngeal cleft, a rare condition where the skin between the food pipe and air pipe hasn't closed properly leaving a hole.
It means food and liquid was entering Shai's lungs and causing infections.
Rather than undergo a dangerous surgical operation, Shai was given a nasogastric (NG) feeding tube.
"They placed it through her nose and into her tummy – it was horrific," Lindsey told the Mirror.
"She was screaming. We spent three days in hospital learning how to feed her. But afterwards there was no literature, no support, no nothing. I remember crumbling."
Shai adapted to the tube and her lungs recovered so doctors decided to make the tube permanent, giving her a Corflo Percutaneous Endoscopic Gastrostomy (PEG), a tube that goes straight into the stomach.
But they then discovered that Shai's stomach wasn't emptying properly, so she was instead given a gastrostomy-jejunostomy (G-J), a feeding tube inserted into the stomach and the small intestine.
Shai "flourished" for the next few years although was in and out of hospital with infections.
She can't brush her teeth in case she swallows the water, and there's always the risk that the tube can be pulled out by accident.
"If that happens you have to put something in the hole to keep it open – it can close within four hours and need surgery," says Lindsey. "We've felt so isolated and lonely, but I always wanted to give something back."
Inspired by her daughter's bravery, Lindsey launched the charity Shai's Smile to help other tube-fed children and those with lifelong illnesses. There are between 8000 and 9000 in the UK alone.
There have ben multiple events for the charity and even a book published about Shai's story.
Lindsey wants to raise enough money for a holiday home by the beach so that families can stay there on trips.
Shai is "going through a bad time" at the moment, says her mum.
"She keeps having episodes where she doesn't know who anyone is – she won't recognise me. She has a weakness down her left side, so she needs to use a wheelchair. But the charity keeps her positive.
"Most people would say that she has the most beautiful personality," says Lindsey.
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