A six-year-old girl has a rare condition which means her brain doesn’t know when she’s full up – and she’s constantly HUNGRY.
Little Megan Adams-Fitzgerald has Prader-Willi Syndrome (PWS) – which causes her to experience endless urges to eat.
Mum Tracy Fitzgerald has a constant battle on her hands as she has to monitor what her daughter eats.
The family are not allowed to mention the word “food” or “snack” otherwise she will think food is coming and cause distress.
They have to hide food in the house because Megan gets upset if she sees food and she can’t have it.
Despite her meals being served on time, with breakfast by 8am, a snack at 10am, lunch at midday on the dot, a second snack at 2pm and tea not a second later than 4pm, Megan is hungry 24/7.
PWS is recognised as one of the most medically complex syndromes to live with and care for by medical professionals – and there is no cure.
It affects one in 15,000 people and in addition to the insatiable appetite, symptoms of PWS include developmental delays, learning difficulties, stubbornness and a fast-rising temper.
Megan can only say a handful of words including mummy, daddy, yes and no.
She cannot walk far and struggles with tiredness.
Single mum Tracy, who works in HR for the NHS, said: “It is a double edged sword because Megan’s condition also means she has a slow metabolism and only requires 60% of the normal daily requirement for food.
“It is so awful because we don’t just say no because she wants extra treats, she actually feels hungry all the time.
“It’s very hard on my four-year-old son, he can only eat when she eats, or we eat in secret.”
Nathan will have supper and a treat after Megan goes to bed at 6pm.
Mum-of-two Tracy, 35, said: “It is very hard because Megan’s food intake has to be greatly monitored. She has a strict diet.
“Megan will literally eat anything you put in front of her, she doesn’t really want for a particular food.
“It is a shame that she doesn’t really seem to like the texture of fruit – she will only eat bananas – because she could probably eat more of that that other things.
“It is hard because some days I feel like everything I do for her is wrong, like when she wants food, and I can’t give her it because it isn’t time.
“Sometimes I really think she doesn’t like me, I’m the big bad wolf who won’t allow her to eat what she wants, but as a parent I have to lump it.
“I’m doing what I do, for her, it’s tough love. I don’t want her to become obese because there’s a lot of associated health problems if she does.
“It really is that extreme, there have been cases of adults who have literally eaten themselves to death.”
Tracy is now dedicated to fundraising in the hopes of advancing ongoing trials for drugs that suppress appetite.
Tracy said: “There will probably never be a cure for PWS but certainly the most challenging aspect of PWS is the appetite.
“If we can tackle this then it will be a great achievement for PWS sufferers.”
Tracy and her friend, Emma Branch, are on a mission to run 10 races in a year.
They will end their challenge in November this year with a marathon.
Tracy said: “A marathon is a scary task for us both, but we will put ourselves through the pain and torture for my little girl.
“Emma is just amazing to do this for us. Every time I see her I just want to hug her. I don’t think I could ever thank her enough.”
Visit Megan’s fundraising page to follow Megan’s journey or visit Tracy and Emma’s Just Giving Page to sponsor them.
