Jenny's Story: My Life with Crouzon Syndrome

What is Crouzon Syndrome?

What is Craniosynostosis?

What is Hydrocephalus?

Growing Up with Crouzon Syndrome

Being an Adult with Crouzon Syndrome

Being a Mother with Crouzon Syndrome

And Baby Makes Three!

Dealing with Unexpected Crouzon Syndrome

The Team of Doctors

My Children's Operations

Photo Gallery

Helping Your Child to Cope with Teasing

Links Page


 God Sent to Me an Angel

Praise be to God

Jenny's Inspirational Sayings

Jenny's Inspirational Sayings II

The Secret of Success





My Life with Crouzon Syndrome

Hi I am Jenny and this is my story about living with Crouzon Syndrome. Two of my children and myself have this syndrome which is a craniofacial condition. It affects the growth of the bones in our skull and face. Even though we all know that there is more to a person then the way they look, most people are judged initially on their appearance and being born with a face that is different can make life challenging and difficult. Your face is always on show and it is very hard to cover it up. I have included in this website a lot of information about what Crouzon Syndrome is and about living with it from my perspective. Please seek professional medical advice if you or your children have Crouzon Syndrome as I am not a doctor. I have written this information with the aim to inspire and help other people with Crouzon Syndrome or similar syndromes to find strength and courage to keep on stepping out into the world.


If you live in Australia, please email me at so I can add you to the database I am currently constructing so we can support each other.


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Last updated 2nd of October, 2008

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