Ben was diagnosed in August 2002 by Dr. Kerr at Royal Preston Hospital . He was 6 years old when diagnosed after many years of genetic tests and finally we had a diagnosis. It helps having a name for the syndrome that Ben is suffering from, but we do not treat him any different now than before. Ben has a younger sister and brother who are unaffected by Mowat-Wilson syndrome.
Ben attends a special school for children with severe and profound learning difficulties and needs a lot of support at school to keep him focused and to help with his behaviour.

Now for the medical info, Ben had pyloric synosis within a few weeks of birth and this was operated on. Ben was referred to a developmental centre when he was 3 years old due to severe delayed development in all areas. When he was 4 years old he started part time at the special school and then a year later went full time. He is currently under investigation for early onset puberty and possible bowel problems . Ben has epilepsy and is under control at the moment with medication and rescue medication for when he does fit. He has severe behavioural problems and needs 24 hour supervision. He will bite himself and other people, spit, push and kick, he can be verbally aggressive and this causes a huge problem at school. He chews everything in sight, rips paper up, breaks any toy you give to him and throws toys at you if he can’t get what he wants.

He can verbally speak about 20 single words and uses makaton signs and gestures. He can walk unaided but is very unsteady and gets tired after a couple of minutes and due to the fact Ben has no concept of danger he needs constant supervision.

Updated summer 2005

In May 2005 Ben went for another heart scan check up regarding 2 fine small holes in his heart, and was told they have now closed up. We want to Help other parents/relatives who have Experienced what we have with this condition, And to receive help and advice from others and likewise.  We want to meet other families who are in the same situation at ourselves.

Updated December 2008

Ben has improved in many way's since summer 2005, He is growing into an adolescence and has started an special needs high school.

He has an active social life, bowling with friends, after-school club and  going to rest bite with friends.

Ben is currently doing ok health wise he has not experienced seizures for a while now and is putting weight on and is growing taller. His behaviour is still challenging and this needs to be channelled positively.

We are currently trying to teach him personal hygiene but like most teenagers is happy to wear same socks all week and become allergic to water.

He is still going to toilet during the day but requires pads at night and still has issues with his bowel movements.

Ben has required a dark hair line on upper lip and its only a matter of time before he needs shaving (what fun that will be )

As Ben is growing into a young man he is taking an interest in girls and some girls at school are taking an interest in him. He loves the attention and if he keeps up the personal hygiene and keeps his behavioural outburst in check he might even find himself a girlfriend .

Ben still requires an high level of supervision and attention and is very demanding but gradually learning self help skills and social skills .

Written by,
Nigel & Kelly, Ben's parents