Josephine was born with Prader-Willi syndrome (PWS). We are raising money for PWS research in hopes to successfully eliminate the challenges that she and others with PWS face every day.
She had poor muscle tone soon after she was born, preventing her from moving, crying, or feeding. She had a nasogastric tube for the 5 first weeks of her life. The past two years have been difficult and although she is slowly getting better, we fight alongside her every single day to try and limit the effects of the disease on her physical and intellectual development.
Hypotonia is progressively decreasing and she is getting stronger every day. People who have PWS may also suffer from mental retardation, self-mutilation, hormonal dysfunction (including body temperature regulation dysfunction, diabetes and much more) and can have severe behavioural disorders. However, the biggest problem of the disease is hyperphagia, which affects all PWS sufferes. This means they eventually all have an insatiable appetite which leads to morbid obesity, and death if the food intake is not closely monitored. The way things are now, Josephine has no hope of living an independent life.. She will never be able to be live alone or even walk in the street alone. No matter how grown-up or clever she may be one day, she will always need to be supervised. The only way to help her overcome this hunger is to fund research. Thank you for your contribution.