Share Your Story

Dandy-Walker Syndrome touches people’s lives in many different ways. Whether you have Dandy-Walker yourself, have a child with Dandy-Walker, or even just know someone with Dandy-Walker, please share your story!



Joshua was first diagnosed with Dandy Walker syndrome in-utero. At our 19 week ultrasound the doctor told us there was a problem with our baby’s brain. We were told that it was very likely our baby would have a severe disability and that it was possible our baby would not survive the pregnancy. Joshua’s diagnosis was again confirmed by MRI when he was six months old.

Joshua - 5 years

Dandy-Walker syndrome has affected Joshua in many ways. He suffers high muscle tone, poor balance and co-ordination, and severe speech delay. Joshua also has Autism, a global developmental delay, sensory integration disorder, gastro-esophageal reflux disease and strabismus (eye squint).

Despite these challenges, Josh is a happy, active and affectionate little boy. He has just started at our local special school, which he loves, and attends weekly therapy sessions. He does not talk yet, but certainly knows how to get his message across.

Joshua has come further than we ever thought he would, and we try our best to make life as enjoyable as possible for him.

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    To raise awareness and provide support for all those affected by Dandy Walker Syndrome.


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