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Holly Williams has put a gate in her kitchen to prevent her five-year-old daughter, Harlow, from eating her heart out.
Harlow has Prader-Willi Syndrome, a rare genetic disorder that causes physical, mental and behavioural problems. A feature of the syndrome is a constant feeling of hunger that usually begins at the age of two.
People with Prader-Willi Syndrome want to eat constantly because they never feel full, and they often have trouble controlling their weight.
Holly (25), who lives in Newport, Wales, says she knew her daughter wasn’t healthy from the moment she was born.
“She was tiny and only weighed 2,15kg. She was really floppy, had no strength, didn’t cry and wouldn’t feed properly on a bottle. The doctors assumed it was Prader-Willi Syndrome because they said they could tell from her features too, such as her eyes, nose and mouth.”
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Children may be born with almond-shaped eyes, a narrowing of the head at the temples, a turned-down mouth and a thin upper lip.
Harlow was diagnosed with the syndrome when she was six months old.
Keeping Harlow from eating herself to death is a full-time challenge, her mom says.
“She eats a full meal and will say she's hungry again straight away. It’s really difficult because she constantly wants to eat and I have to make sure she doesn’t.
“It’s hard to manage and I have to try and explain to her that she’s not really hungry,” Holly says.
She adds, “If I were to leave a plate of cake and I wasn’t around, Harlow would easily eat it all. It’s happened plenty of times before.”
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“I make sure she has a healthy and balanced diet, but she's still allowed treats as she's just a child after all, so I don’t want to completely deprive her,” she explains.
The syndrome has also caused other health problems for Harlow.
She weighs 44kg, roughly 19kg heavier than the average five-year-old, suffers from sleep apnea and has mobility issues.
Harlow also has behavioural issues caused by the syndrome, which means she "acts out" more frequently than other children her age.
“I have to be stern with her or she'd rule my life. However, we have a really close mother-daughter bond as we're together all the time,” Holly says.
She adds, “It can be hard to deal with the conditions sometimes, but because Harlow is my first child I don’t know any different.”
Holly says she’s opening up about her daughter’s condition to raise awareness about her illness and what she goes through every day.
Despite her condition, Harlow is a happy girl, her mother says.
“She's at a mainstream school and is getting on really well.”
Sources: dailymail.co.uk, thesun.co.uk, nypost.com, mirror.co.uk, mayoclinic.org, facebook.com
