Catherine - posted on 11/03/2008 ( 1 mom has responded )
Hi there - just wanted to introduce myself and my son Michael who at the age of 18 months was diagnosed with VWM Vanishing White Matter. He was a healthy child up until this time developing normally. Over the winter he got a bad cold and it never seemed to go away it just kept getting worse. He was very lathargic, did not want to eat, drink, walk, or even watch his favorite TV show. I took him to his family doctor who gave us medication for a sinus infection but it didn't work, finally by the end of the week when he still had not improved we took him to Sick Kids Hospital where they did test after test and pumped him with antibiotics. At this time after a cat scan and MRI they gave us the diagnosis. A final blood test confimed it. He is missing a gene in his body that he needs. We have been told that he probably won't make his 10th birthday and will never be able to walk on his own although he tries very hard. We have also been told that he will develop mentally with very little delays but every time he gets a cold or bump on the head he might go into another setback. Each setback will take away his speach and motor skills. I am looking for other parents our there who might be able to help me. I have been told that there are only 200 diagnosed cases worldwide.