Welcome and thank you for taking the time to read my family’s story. If you have come across my website then you are more than likely searching for support as you go about your CVI journey.
I want to tell you about how our CVI journey started:
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 (so it can then disseminate depth, colour, movement, etc), 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 intense 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 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 is not very well known in South-East Queensland, Australia, let alone in the whole of Australia. 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 all this CVI stuff out on mostly on our own. That saying ‘A worried mother does better research than the FBI’ is very true, as I am sure you have worked out as well! The amount of paperwork I printed finding out EVERYTHING about CVI, the CVI range (read my post on this to find out what this means) and hundreds of research papers have accumulated in a huge folder labelled ‘EVA-CVI!’. It can become all encompassing and many times it has, so this where I am now putting down all my successes and failures.
I am now fortunate to have found a home-grown support team and together we have founded CVI Community Australia. Heidi Zec, mum to beautiful Luka who has also been diagnosed with CVI, Orientation and Mobility Specialist Bronwen Scott, and Orthoptist Natalia Kelly. Together, we are spearheading CVI in Australia through CVI Community. Our aim is so provide emotional support for those starting out, and Australian resources and information on CVI. Please head on over to our Facebook Group, we would love to have you and support you.
I hope you find some of this information useful, and if you have any questions, I would love to hear from you – shoot me an email and let’s talk (or just have a vent).