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The Mowat-Wilson Syndrome Syndrome Support Group was established in March 2005, Since then we have had a lot of contact from family's with Mowat-Wilson Syndrome children, people from the medical profession & education staff from all over the world.
aims and objectives of the Support Group
1. To offer support to other families affected by Mowat-Wilson Syndrome.

2. To raise awareness of Mowat-Wilson Syndrome with professional workers and other interested individuals.

3. To raise awareness of the Mowat-Wilson Syndrome Support Group.



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                 September 2008
The annual Support Group meeting will take place on the Saturday 25th October from 10.00 am till 5.00pm at the following address:

Exminster Primary School
Main Road

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Toby was born on 26/12/04 following a normal pregnancy. He is our third child, with an older brother and sister. Within a few hours of the birth it became clear that Toby was having difficulty breathing. A heart murmur was detected and when his condition continued to deteriorate he was transferred from our local hospital to Southampton Pediatric Intensive Care Unit.

Toby had not yet ‘poohed’ spontaneously, so within a few hours of being at Southampton was diagnosed with Hirschsprungs Disease (long section). It transpired that his distended stomach was the cause of the respiration difficulties and 8 days after birth was given an Ileostomy.

» Read More About Toby and other families affected by Mowat-Wilson Syndrome in our Patient Profiles section