Holly Lindley needs to drink six pints of milk every day to stay alive.
The nine-year-old suffers from an untreatable medical condition called glycogen storage disease, which means her body is unable to convert the food she eats into energy.
Every night Holly has to drink milk mixed with five spoonfuls of corn flour, which contains starch and acts as a slow release of energy to help her last through the night, before bed or else she would fall into a coma, according to the Daily Mail.
When Holly was just 18-months old she collapsed and had to be resuscitated by a neighbor, and after months of her early life being spent in and out of the hospital, doctors finally diagnosed her with Glycogen Storage Disease type 9. Doctors said that because Holly's body cannot store energy, she has to eat regularly otherwise she could fall into a coma.
Her mother Karen Shaw, 35, said that in the beginning she would have to give Holly food every two hours.
"At one stage we were having to give Holly food every two hours, which meant waking her up through the night to get her to eat a piece of toast," Karen told the UK newspaper Doncaster Free Press.
"For the first three years it was very, very difficult," she told the paper. "We had to make sure she always has a drink with her and if she does P.E she has to have a drink before."
Since Holly's milk treatment began three years ago, her mother has spent nearly £2,000 ($3,200) on milk alone.
"We have to make sure she always drinks it because some nights she doesn't want to," Karen said, according to the Daily Mail. "We have to remind her it's for her own good."
"It would be easy if she drank fizzy drinks that are loaded with sugar but she doesn't like them so milk it is. We get through so much in this house," she said.
Holly also needs to drink milk throughout the day, and as she gets older and needs more energy, she will need to drink even more than the six pints of milk she now drinks a day.
"She loves milk and she's got used to the corn flour now. It's normal to her. She just doesn't like it when it gets to the bottom and it's all powdery," Karen said. "As well as drinking milk, Holly snacks on chocolate and sweets between every meal - I'm sure she's the only girl at school that gets two chocolate bars in her lunch box."
Holly lives with her mom, her step dad and her two brothers, and her family tries to maintain a normal life despite her life-threatening condition.
"Her brothers are older so they get very protective of her, but they do torment her too. They say she gets away with everything," Karen said. "I try to keep everything as normal as possible, but Holly still gets embarrassed about her condition."
"When she went on her first overnight school trip I had to have a word with her teachers because she didn't want to drink the milk with cornflower in front of her friends," she said. "Now she's older she understands it better and knows she needs to drink it to keep her alive. She's less embarrassed and will go to sleep overs and on school trips. Her friends all call it Holly's special milk."
Holly still needs to have regular blood tests to make sure her energy levels are safe and that her blood sugar levels are healthy to prevent her condition from worsening.
Patients like Holly cannot convert food into energy because they have inherited a defect in one of the enzymes responsible for forming or releasing glycogen, glucose stored in the body that is a major source of energy, as it is needed by the body during physical activity or between meals.
Published by Medicaldaily.com