what is Mowat-Wilson Syndrome?patient profilesfamily supportnewssupport group informationfundraisingprofessional zonelinkscontact informationhomepage

Our 14 month old son Alexander was diagnosed with Mowat Wilson Syndrome on the 3 March, 2006. We had spent the last year trying to deal with severe eczema and multiple allergies (dairy, egg, soy, and multiple nut) which had lead to his having been hospitalised with severe bloody diarrhoea.

At birth we had thought our bouncing 10 pound baby boy was going to be another ‘big, tall strapping child’ like his 12 year old sister and 9 year old brother. But, from the start he looked a little different from the other two and my mother who died just a few weeks ago used to tell us that if we would only hold his ear lobes down when he was sitting on our knees, then they would soon settle into place!

At five and a half/six  months before all the bowel bleeding began, Alex seemed to be growing normally, but was a long way from being able to sit up. By 10 months when we had the bleeding and allergies under control through diet we put his developmental delays down to the fact that he had been so ill. But, as more time went by it became increasingly clear that the allergies may have been a distraction masking a bigger ‘problem’.

In October ‘05 Alexander entered the Early Intervention Services here in Ireland which meant he started regular physiotherapy sessions in a bid to ‘bring him on’. The endless round of seeing medical specialists was also underway – to date Alex has seen a multitude of consultants including, allergists (2), endocrinologist, gastroenterologist, developmental paediatrician, ophthalmologist, audiologist and finally a geneticist.

Since his diagnosis we have been assured that there will be good support for Alex – tomorrow he starts speech therapy (I can’t imagine what they will do!) and in time he will also receive some occupational therapy.

People have always commented on how ‘good’ Alex is. He has been to Australia to see my family three times and on the long haul flights there were always many comments about how quiet he was. I always felt that he was ‘too good’. I knew I should have had a squirming, inquisitive baby causing havoc at that stage!

At almost 15 months Alex looks like a baby of about 6-8 months and some of his development has been placed at that of a 3 to 4 month old. He was born into the 90th percentile and is now at the bottom of his percentiles for height and head circumference and in the 10th percentile for weight.

But, the Alex who is the adored centre of our family is a really smiley little guy,  with a belly chuckle that just lifts your day. He is also very ‘chatty’ and babbles constantly.  He puts his arms out when he wants to be picked up for a cuddle and has always communicated exactly what he wants with his eyes.

A couple of things which puzzled us from the start – and we are not sure whether this might be a form of epilepsy is that Alex from the time he was a very small baby would stare at us unblinkingly for long periods (for example in his car seat) and also had really odd tremors like when you tickle a dog on the belly, in one limb or other. He now also suffers alternately from diarrhoea or constipation.

Our two older children absolutely adore Alex and shower him in hugs and kisses – he gets very excited when he sees them coming!

We are very proud of his every achievement – Alex can now sit up quite well for long periods and he can stand (with a ‘catcher’ at hand) at a couch and play with his toys. His favourite toy is a xylophone which he loves to bang with the stick!

We can not imagine life without our beautiful little boy. He is an unending source of joy except maybe when he wants to play at 3am in the morning!

In the words of our big kids – we just think Alex rocks!!!

Written by his mum Annette Kinne

« Go Back