Mowat-Wilson Syndrome is a recently defined mental retardation syndrome
(1998) usually associated with multiple health defects and recognizable
facial properties caused by a genetic mutation. The major health defects
include Hirschsprung's Disease (although not in all cases), intellectual
disabilities, seizures, congenital heart disease, Agenesis of the Corpus
Callosum, male genital abnormalities (hypospadias) and smaller than
normal heads. Facial properties include prominent narrow chin, open
mouth, cupped ears with protruding lobes, broad nasal bridge with
rounded nasal tip, and wide set eyes.
Here is Information we have
gathered from our personal experience and from others that have a child
with MWS.
“Most”
children with MWS have happy demeanors. They tend to comprehend more
than their limited development would suggest. Most likely the child
will need a lot of work with their fine motor skills and will need
occupational and physical therapy. They will walk with an unusual gait
if they are mobile, some children can be severely delayed with their
motor skills. Chances are that they will be nonverbal (apx. 80% are
nonverbal and those that do speak use 25 words or less) and will
need some sort of speech therapy. We and others have had limited
success working with a PEC’s (picture exchange communication) system,
and some success with sign language. Due to the
lack of fine motor skills in their hands and fingers it is difficult to
try and teach a lot of the signs. Our child can sign more, drink, eat,
cookie, cracker and bread (the last three being his favorite things to
eat) but they are not the exact form, but close enough for us to
understand what he wants. You may also find that MWS children seem to
make progress with a specific task only to have them seem to forget
days later, one step forward and two back is common observation. If they don’t have
an ostomy of some sort they will most likely not be toilet trained (apx.
70% are not) but others have had success timing their toileting needs
with varying degrees of success.
This may have something to do with the fact that many of the children
have been diagnosed with Hirschsprung’s Disease and some sort of
corrective surgery, but we don't have any
scientific studies to back that up.
I hope this information is helpful.
