A mum is desperate to find a cure for her two-year-old daughter before her rare condition kicks in which means she will spend her life always being HUNGRY.
Little Rosie Gray was diagnosed with Prader-Willi syndrome shortly after birth which causes her brain to fail to send vital messages to parts of her body.
In addition to a permanent insatiable appetite it will mean she will never feel full.
Her mum Sarah Gray, 36, has now launched a bid to raise awareness and funds for research into a cure for what she described as a “vile” syndrome.
And she said she knows the full effects of what will happen to her daughter is coming sooner rather than later.
Sarah said: “It hasn’t quite kicked in yet, it’s usually between two and six years old.
“But she is aware of food and if she sees you eating food she will want it – we have to make sure we don’t snack around her.
“If I’m honest it’s still so very raw, we’re at the start of a very long journey.
“We just want her to have a future where she will feel full.
“It still hurts so much, and I still walk around in a blur sometimes through disbelief.”
Sarah, a full time mum who lives with husband Andrew, 38, and their three other children, Holly, six, Jasmine, four, and Berry, three. added: “The hunger they feel is far more aggressive than you or I can imagine.
“It’s shocking that anything like this can exist – I’d never heard of it before she was diagnosed.
“It happens because the message that they are full is not sent from the brain.”
Prader-Willi syndrome is so little-known doctors do not have a cure for it and it affects just one in every 15,000 people.
It can cause varying degrees of learning disability, short stature, excessive sleepiness, and poor emotional, social and sexual development as well as obesity due to the excessive appetite and low muscle tone.
Rosie turned two in December but is only able to stand for a few seconds and is unable to walk or talk.
Her family, from Plymouth, Devon say their world “changed completely” the day she was diagnosed.
But they say the youngster is known by family and friends as a happy, content little girl.
Sarah added: “She steals your heart when you meet her, and lights up the room with her lovely little smile.
“She is just adored by all of us, she’s surrounded by love.
“But as Rosie gets older, we are still learning more about the syndrome and what the future holds for Rosie – it keeps on getting scarier.
“I’ve heard some horror stories of the extents those with PWS go to to get food because they’re driven to find it. It frightens the life out of me.”
Rosie is currently on a strict but healthy and varied diet of meat, dairy, fruit and veg just like other children her age.
But she has had to visit a dietitian every month to monitor her consumption and she will have to be put on a calorie controlled diet.
Sarah says her coping mechanism is putting all her energy into helping to find a cure.
She has set up a fundraising page for Rosie’s sister Holly and her friend Ruby who are taking on their school’s half marathon in aid of raising funds for The Foundation for Prader Willi Research UK.
The family are also holding a party to raise extra funds and are asking for kind donations of raffle prizes from local businesses.
To donate visit www.justgiving.com/fundraising/hollyandruby
