Rosie Gray, two years old, was diagnosed with Prader-Willi syndrome as soon as her mom, Sarah, had given birth to her. The disease makes her brain unable to receive important messages from various parts of her body. It also left her always hungry and can never feel full, SWNS reports.
Sarah, 36 years old, had launched a campaign not only to raise awareness of the disease, but also to fund her daughter’s medical quest to find a cure for it. She was just waiting for the entirety of the disease to claim Rosie.
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 and Andrew, 38 years old, have three other children. Sarah, who’s a full-time mom, said, “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 considered to be very rare by the doctors. There is no known cure for it. The disease can affect learning and could cause “short stature, excessive sleepiness, and poor emotional, social and sexual development as well as obesity due to the excessive appetite and low muscle tone,” according to SWNS.
The Gray family, who lives in Plymouth, Devon, said that their entire world had been shocked and shuffled by this revelation when she was diagnosed with the disease. Rosie is known to be a happy and content girl.
Sarah said, “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 get food because they’re driven to find it. It frightens the life out of me.”
source : healthypage.com