A baby girl has been born with a rare condition that means she will grow up permanently – HUNGRY.
Little Rosie Gray, aged seven-and-a-half months, has Prader-Willi syndrome which leaves sufferers constantly craving food and never feeling full.
The incurable condition, caused by a missing vital chromosome, leads to delayed development and dangerous weight gain or obesity.
Rosie’s parents will have to keep the fridge and cupboards locked and have strict set meal times as her brain simply doesn’t know when it is full up.
Her mother Sarah Gray, 35, has now launched a campaign to raise money for much-needed research into the condition.
She said: “They say it’s like a silent switch goes off. Part of her brain is missing to tell her that she’s full up, so she will always feel hungry.”
Mrs Gray says the family, who live in Plymouth, Devon, will have to adjust their lives as the condition progresses.
She said: “It will mean constant supervision, set meal times, cupboards locked, fridge locked, our whole lifestyle will have to change.
“We are going to have to grow into this, we will have to try to educate Rosie as soon as possible that it’s not ok to eat all the time.
“The more I learn about it, the more scared I get because it’s not just the food issue.”
Rosie was born seven weeks early in December last year by emergency caesarean section at Derriford Hospital in Plymouth, Devon.
Mrs Gray said she was very small and initially unresponsive.
She said: “She was a little fighter, she was really holding her own, but she was a very quiet baby.
“She was black and blue and I don’t think anybody really knew what on earth was going on.”
After Rosie was moved from the neonatal intensive care unit to the high-dependency unit, Sarah and husband Andrew, 37, were given the devastating diagnosis.
Mrs Gray said: “Everything changed; our world turned black. You never think you’re going to be one of those families.”
Rosie’s development remains slower than many other babies and she will take longer to reach milestones such as rolling and crawling.
She is undergoing regular physiotherapy, but the family realise they face a difficult journey.
The next step is to start Rosie on a growth hormone, which will help develop muscle tone and boost her strength.
Mrs Gray, who has three other daughters aged between two and four, decided to use her experience to help others.
She and a group of friends will take part in the Mud and Sweat Mud Run in September in aid of the Foundation for Prader-Willi Research UK.
Mrs Gray has already raised more than £1,300 and says she has been overwhelmed by the support of the public.
She said: “You have to have some hope for a better future. I don’t know how much hope there is, but I know we have to have it. It’s going to be a long old rocky road.”
To donate to Mrs Gray’s challenge visit justgiving.com/raceforrosie.
