Like many parents, Patsy Lecont had not heard of Prader-Willi syndrome (PWS) until her daughter, Millie, was diagnosed with the genetic condition which affects one in 25,000 live births.
Millie is now 12 years old, but Ms Lecont still recalls the anxiety of her starting nursery at two and a half years old, as well as the invaluable support that she received from Prader-Willi Syndrome Association (PWSA) UK and an early learning foundation worker who liaised with nursery staff and explained Millie’s needs.
‘Starting nursery is a big deal for any parent, but when it is a child with special needs, it can be really overwhelming and frightening. There is a lot of reassurance to parents if staff know or gain an understanding of the syndrome,’ she says.
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