When Fred attended his six week check-up, mum Karen expressed concern about his eye focus. Within 24 hours Fred had been referred to the UCLH Eye Clinic, then within a month Fred was seen at Great Ormond Street Hospital and diagnosed with Familial Exudative Vitreoretinopathy (FEVR), a genetic progressive eye disorder affecting the growth and development of blood vessels in the retina of the eye.

“At the time we were living in London and we were lucky we received the diagnosis quickly”, says Karen. “Being severely sight-impaired means Fred needs full time support to understand the world around him. He needs extra time and resources so he can learn." Fred is thriving in mainstream school and has full time support by a Teaching Assistant who is also a Braillist. “We feel very fortunate. Fred has made great friends at school and is loving learning, though he does tire very quickly due to his visual impairment.”

Karen knew about the work of Family Fund before Fred was born but it was the Early Years Services who reminded her of how the Fund can help. To help Fred’s emerging independence, Karen applied for a grant for a special low bed so that he can negotiate independent movements without injuring himself. An award was also made for a light box which has been very useful in offering a play environment that is adaptable and creative. Fred uses this for all sorts of play and learning from A B C to dinosaurs.

Since that first application Fund has also helped with an iPad and a playhouse, which will become a sensory den. The iPad in particular has helped Fred’s learning and development at home, reinforcing what he has learnt at school. Karen says “It is very important that he is able to use what sight he has alongside technology to achieve his potential. It is astonishing to see how quick he has picked it up and is using it in all kind of useful ways.”

“The Family Fund have helped us in so many different ways over the last few years and really made a difference to not only Fred’s life but all of us as a family. Without them we would probably have got into more debt to give Fred the things he needs to help him develop and thrive.”