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Child Spotlight: Audrey

 

1. Please introduce your child and list the name of their diagnosis

Audrey is 3 1/2 and was diagnosed with Prader-Willi Syndrome at 12 days old.

2. Tell us how this diagnosis affects Audrey and your family’s day-to-day life.

Audrey’s diagnosis affects our family in many ways. Her delays in speech (common for individuals with PWS) is the biggest challenge these days, as Audrey has more complex ideas/needs that she wants to express. Physical unsteadiness due to globalized low muscle tone leads to frequent outbursts for fear of her falling and hurting herself.

3. What have you learned from your child and being her parent?

We have learned to take life as it comes. Just because a doctor tells you who/what your child will be, or what they will/won’t achieve; it doesn’t define them. Children are amazing at defying odds and Audrey is no different.

4. What is something that makes your child happy?

Audrey loves dinosaurs, all bugs (even the really icky ones) and dancing

4. If you could give any advice or guidance to a fellow mom receiving a new or similar diagnosis, what would it be?

Any diagnosis is terrifying. Allow yourselves time to grieve the life you envisioned and you will find the joy in the life you will build. Your child, although they have a diagnosis; will surprise you in ways you never imagined.

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