Living with Ichthyosis Follicularis & Photophobia Syndrome
Brothers, Cole and Liam, were born with Ichthyosis Follicularis with Alopecia and Photophobia syndrome. They have struggled with skin abnormalities, seizures that can’t be controlled with medication, very limited speech, delayed fine and gross motor skills, and no hair growth until age nine. It can be very difficult growing up looking different, talking different and walking different. Inclusion is key. Inclusion expands their world and the lives of others they meet.
Being able to get around, even at home, is challenging. As the boys grow it becomes more difficult for their parents to assist and lift them up stairs. A lift would make it possible for caregivers to safely assist Liam and Cole and it would assure their safety too. They next time you run up the stairs, maybe even two stairs at a time, think of Liam and Cole….and how those stairs represent enormous hurdles. Help make their journey easier, visit the Variety Wishlist.