Tommy in his orange PJ’s

The Orange Shirt

Tonight Tommy was getting his nightly shower and his Dad was helping him out. As his Dad was helping him get into his pajamas, Tommy said something. His Dad thought he said something like “eyes hurt” and was worried he’d gotten some shampoo in Tom’s eyes during the shower. So Tom’s Dad asked him, “Did…

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…