Prader-Willi syndrome is a genetic disorder usually caused by deletion of a part of chromosome 15 passed down by the father. The most common symptoms of Prader-Willi syndrome are behavioural problems, intellectual disability and short stature. Hormonal symptoms and constant hunger that can lead to obesity. There is no cure for Prader-Willi syndrome but many patients will benefit from a supervised diet. Some symptoms can be treated with hormone therapy.

There is no cure for PWS however Growth Hormone therapy (GHT) is imperative to those with the syndrome to improve strength and muscle tone, in addition GHT helps development. Physio, speech and occupational therapy in parrell to GHTis important to help the symptoms that present with the syndrome.

Sadly, people with Prader-Willi syndrome have a reduced life expectancy. The average life expectancy is 30 years, but people have been known to live into their 60s.

Most adults with Prader-Willi syndrome are not able to live fully independent lives, such as living in their own home and having a full-time job. This is because their challenging behaviour and issues with food means these environments and situations are too demanding. But i am more than happy to have my girl with me forever!

Luna is monitored by a paediatric dieting. Her food is weighed and portioned according to her BMI and what her body needs. She basically follows a keto/banting diet - low carb and no sugar!

I try not to overwhelm myself with the possible challenges in the future, because that creates fear and causes more stress and anxiety. We try to live in the NOW, and take on the challenges as they come.

The part of the brain called the hypothalamus, which produces hormones and regulates growth and appetite is dysfunctional. This may explain some of the typical features of Prader-Willi syndrome, such as delayed growth and persistent hunger.