Take a deep breath. You are not alone. We are here to help and tell you there is hope.

Your child is individual, unique and special. They will smile. They will laugh. They will learn. They have a future, just on a different path. Your child can achieve, they can succeed and be happy.

So take each day as it comes … one step at a time, and never forget … you have a rare and beautiful child and we are only a phone call away.

Hattie has come a long way in 16 months...


Prader-Willi syndrome (PWS) was first described in 1956 by Swiss doctors, Prof. A Prader, Dr A Labhart and Dr H Willi, who recognised the condition as having unique and clearly definable features.

These features are, as medically described:-

• Hypotonia: weak muscle tone, and floppiness at birth.
• Hypogonadism: immature development of sexual organs and other sexual characteristics.
• Obesity: caused by excessive appetite and overeating (hyperphagia), and a decreased calorific requirement owing to low energy expenditure levels. (Obesity is not normally a feature of those whose food intake is strictly controlled.)
• Central nervous system and endocrine gland dysfunction: causing varying degrees of learning disability, short stature, hyperphagia, somnolence (excessive sleepiness), and poor emotional and social development.

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