Tomas was born totally blind. His blindness was so severe that you could shine a bright light in a dark room and he could not see it.
His blindness was due to the damage to the Visual Cortex area of his brain, caused by respiratory problems in the first few days of his life.
The Visual Cortex is responsible for interpreting the signals sent by the physical eye, down the optic nerve, to the brain. If the Visual Cortex is damaged the brain is unable to receive and interpret visual information and therefore Tomas is unable to see or understand the world around him using his eyes. This in turn causes problems with his balance, standing, walking, eating and significantly increases the extent of his global learning difficulties. Since he unable to understand the world around him by sight it is extremely difficult to teach Tomas via conventional learning methods.
He cannot focus on objects, images or books and therefore the majority of his learning methods have needed to be adapted to use his hearing rather than his sight and therefore most of what he is able to learn is based on non visual memory and involves repetitive learning.
Over the past 5 years his vision his improved from him being totally blind to seeing approximately 10% in his right eye and some minimal vision is his left eye. This improvement has been greatly assisted by the use of ultraviolet light stimulus in his younger years. Due to researching Visual Cortex Blindness / Cortical Visual Impairment on the internet, we discovered that the use of ultraviolet light, rather than conventional light sources, was more likely to be seen/recognised by the brain. Use of different colours of florescent paper cut into different shapes and used in a dark room with ultraviolet light could stimulate the Visual Cortex and aid in improving vision in the early years.
We started to use this method of visual stimulation from the age of about 8 months for about 5 to 10 minutes, twice per day, in order not to cause damage by over using the ultraviolet light, but stimulating the visual pathways in the brain in small regular sessions. From the very first session we recognised that Tomas reacted to the light in a way he had never done with conventional natural or atrificial light sources. He did not follow the light through movement initially, but the expression on his face changed immediately that we held the light in front of him and he moved his head to look for the light when we moved its position. There were various options for buying ultraviolet light sources of varying costs, but we found that a UV mosquito light was very reasonably priced and worked well with Tomas. We used this in conjunction with orange, yellow, green and pink florescent paper cut into different shapes and types of animals.
In the same sessions in a completely dark room we used videos to try and stimulate his vision, such as the Baby Einstein videos, which have bright colours and simple high contrast images moving to classical music (also thought to stimulate young minds).
We also began visual stimulation in natural light conditions using a large TV screen with simple bright coloured DVD images to try and get him to look at the screen. We also used a very brightly coloured mobile above his bed to encourage him to look at it before bed and in the morning. We bought fibre optics lights, toys with lights, sounds and colours and encouraged Tomas to feel and touch the toys and press the buttons with assistance to be rewarded with sound.
Within a few months we saw a marked difference in his ability to track objects and within eight months we discovered Tomas could see bright coloured objects and track them in natural light, which was an amazing breakthrough. It was an incredible moment in a day that we will never forget for the rest of our lives and often recall with high emotion.
We have since continued the vision stimulation sessions with different colours and objects in natural light starting with bright colours and high contracts between the colours to more subtle colours and contrasts. We use flashcards and very simple books to try and get him to consistently focus and images, words and simple sentences.
These sessions have also encouraged his speech by relating the images that he now recognises close up with the words written in black and white next to the images.
We have no idea what the future holds for the future potential improvement in Tomas´s vision, but research and information suggests that the plasticity (adaptability and flexibility) of the brain for improvement using stimulus is more evidently a factor in visual improvement in the first 12 years of life. There is no doubt that his visual impairment affects and compounds all his other areas of disability, so we will continue to use all methods available to us to stimulate his vision and his visual focus ongoing.
We are also constantly investigating the area of Stem Cell Treatments and ongoing research and raising funds in order that Tomas may benefit from advances in this fascinating and already successful area of medical research. (See our blog update on our visit to Bioeden, Daresbury, near Warrington in the Science and Innovation Centre regarding donating and storing stem cells from Tomas´s milk teeth for reasearch purposes and future use in stem cell treatment).