CVI, Hope, and Christmas

One of the cruellest aspects of the Dude’s epilepsy is how it has damaged his vision. As a baby with uncontrollable epileptic activity going on constantly in his brain, he was effectively blind.

The first glimmer of optimism came from a wonderful human being who evaluated him for developmental therapy. He was the first to explain to us what was really happening in our son’s brain in terms of development v’s seizure activity, he was the first to tell us not to give up hope and he was the first to say the term ‘cortical visual impairment’.

CVI (cerebral visual impairment is the more accurate terminology) is what happens when seizure activity prevents the brain from developing the pathways needed for vision to correctly develop despite the optic nerve and eyes themselves being perfectly formed.

In our boy's case, the seizures were so extreme that his brain just couldn’t fathom what his eyes were telling it. For the first time since our boy was diagnosed we were told NOT to just ‘watch and wait’ but to start working with him immediately to develop those pathways and help his brain overcome the negative impact of all that pathological electrical activity.

A decade on from that first meeting, an enormous amount of effort and hard work later, and our boy has functional vision.

He still have severe visual impairment however he DOES have useful vision. Working with his teacher for the visually impaired we have learnt a huge amount about how to help guide his visual development; we’ve learnt that his peripheral vision is far better than his central vision, but we now have tools to help him continue to develop his visual skills.

And there is no better time of year for him to really show off how far he’s come, than at Christmas. I will never, ever get tired of seeing how my boys face lights up (sorry) with excitement when he sees houses start to light up with decorations or how much joy he gets from attending events such as the Lights at Trentham Gardens – a favourite family haunt of ours any day, but seeing it lit up after dark with festive music playing at just the right level to not be overbearing takes it to another level for him.

The presence of those multi-coloured light up toys at this time of year make visual therapies that much more fun too.T omorrow we will be putting our decorations up, somehow I suspect our little superstar will be instructing us on where things need to go! Merry Christmas everybody, here’s to a peaceful, safe 2023.