Hungry For A Cure

Sarah’s daughter’s condition means she’s always hungry…

It was obvious there was something wrong… When Rosie was born seven weeks early in December 2014, she wasn’t like other babies.

She didn’t cry, open her eyes, move her head…

Doctors ran tests, but back home she still failed to thrive. She had to be tube fed, and she slept for nearly 24 hours a day.

Me and my husband Andrew, 38, already had three daughters – Holly, 6, Jasmine, 5 and Berry, 3 – so we knew about babies!

When Rosie was just a few months old, we finally had some answers…

‘She’s got Prader-willi syndrome,’ a consultant said.

It’s a rare condition where her brain fails to send vital messages to her body.

It can cause reduced muscle tone, restricted growth and learning difficulties. It also causes a higher desire to eat.

It’s caused by a chromosome abnormality, with no cure.

So little was known about PWS, it was a learning curve for the doctors and us.

Rosie failed to progress like other babies. She continued to be tube fed until, at 18 months, she began sucking a bottle.

We knew Rosie would never be like other children, and it broke our hearts.

Desperate to help find a cure, we started fundraising.

Mud runs, fun days, sponsored beard shaves, bucket collections…

Soon, we’d raised over £15k for the Foundation for PraderWilli Research.

Rosie’s 2½ now. She still doesn’t talk, but she’s started taking steps.

She’s aware of food, so we only eat in front of her at meal times.

She’s on a strict, healthy diet, and visits a dietician regularly.

It’s not easy. But Andrew and I take each day at a time.

Rosie’s smile can light up a room, and if I could, I’d take PWS away from her. But we love Rosie no matter what.

To donate go to: www. justgiving.com/raceforrosie

We knew Rosie would never be like other children