Tom and his Dad

Is Tom Rare?

It is Rare Disease Day and that makes me wonder if Tom is Rare? Tom is blind due to a retinal disease called Persistent Fetal Vasculature Syndrome. Only about 10% of infants affected by PFVS have it bilateral like Tommy does. Tom’s symptoms are close to a disease called Norrie’s disease but genetic testing and his…



Friday was Open House day at Tommy’s school. This year it involved a meeting of parents who have children that will be transferring to their home districts in the next couple of years or so. I was very interested to sit in this meeting and hear what the other parents had to say. They brought…