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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.

2012 MWS UK Meeting

We are pleased to announce that the MWS Support Group will be organising a get together at Crealy Adventure Park in Exeter - Devon on Saturday 14th April. If you are interested in attending please email Mark Exell or Telephone 01209 219336 for further details.


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 Paediatric 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