It all began in January 2013, when my daughter Eva had just turned one the week before. She awoke one morning and was not herself, and within an hour was not responding. In the coming days, we found out that Eva had contracted the Herpes Simplex virus that had damaged her occipital lobe, which is your visual processing centre. Eva can ‘see’: her eyes work, and her optic nerves take that information to the brain but this is where it all stops for her – her brain can’t do these things due to the damage caused by the virus.
Doctors call a viral inflammatory attack on the brain ‘viral encephalitis’.
Parents call it your worst nightmare.
It took several days to work out what was going on, but the doctors on call loaded her up with several different strong medications to stop whatever was going on, and it worked. The damage could have, should have, been far worse. Babies under 3 months who contract this virus have a very high chance of not surviving. Babies under 12 months who contract this virus will more than likely end up with severe motor development and cognitive difficulties. Thanks to the specialists injecting Eva with a loading dose of several different drugs, the virus attack was very mild on Eva’s brain and did not spread further.
The combination of Eva contracting the virus and damaging only her occipital lobe is very uncommon, and some have considered it rare. I have found a medical paper written by a Researcher in Italy who was studying this very occurrence, and he could only find a handful of children in the world (Unfortunately he never replied to my countless emails to him in English and Italian).
The support we received at the hospital with all the specialists was wonderful, second to none. They became part of our family for the 4 weeks we were in hospital. But once we were discharged, we were on our own.
CVI on its own, is not common: our support team in the area have only ever seen children with CVI who are unable to articulate what is happening around them – they are non-verbal and commonly, immobile. So, we have had to work out all this CVI stuff mostly on our own. The saying ‘A worried mother does better research than the FBI’ is very true, as I am sure you have worked out as well if you are a parent navigating this path.
The amount of paperwork I printed finding out EVERYTHING about CVI, the CVI range and hundreds of research papers, have accumulated in a huge folder labelled ‘EVA: CVI!’. It can become all-encompassing and many times it has, but finally I am thrilled to be part of the CVI Community Australia: a place where parents like me can write about our achievements, struggles and concerns; a place where specialists such as Bronwen and Natalia can share their insight and be our own personal ‘ear-to-the-ground’.
Following onset of Eva’s illness and subsequent vision loss, I didn’t have the luxury of having a support network of like-minded parents and specialists who understood and helped guide me (hence my resilience is strong!) so we hope that you all reach out to us: say hi, tell us about your best and worst days, and help us build a community of endless support and information. This is an exciting chapter for all those involved in the CVI Community in Australia, we finally have a place to work together, share together and help our children together.
In Eva’s words
My name is Eva and I am 8 years old. This year I have a very good teacher, her name is Mrs H. I learn a lot of things at school and I like it very much. I like going to school! At school, everyone else writes with a pencil but I write with a Braille Machine because I can’t see very well. Whenever you do good things at school you get a sticker and if you reach 5 or 10, you get a prize which you get to choose from a box. I have a Teacher’s Aide and her name is Shauna, she helps me by Brailling my worksheets and she also helps me with Braille to make sure I am Brailling correctly.
At home, I have a brother, his name is Leo and he is 4 years old. He likes to play with me a lot, we play lots of different things like puzzles and car games. I have a pet fish, Goldie; I like sitting with her and talking to her.
The things I find hard to do is using the new Mountbatten Braille Machine, I only got it a few months ago so I am learning the new keys. But apart from that, I don’t find many things difficult!