“Jai truly believes he will be the first blind child on the moon.”
4th August 2020
Jai-Ryan is a 7 year old boy who has been a member of Living Paintings since he was 2. Jai was born at 23 weeks and so because of his prematurity he suffered with Retinopathy of Prematurity (ROP), which causes blood vessels to grow in the Retina, which can lead to blindness.
Jai’s mum shares their story.
“Jai had his eyes lasered as a treatment for ROP, which made his eye sight Myopic (extreme short sightedness). When he was just 12 months old he was diagnosed as having Hydrocephalus (fluid on the brain) which swelled and added pressure on to his eyes – this ended with a detached Retina on his good eye (right eye). Jai was operated on for the detachment and he now has a buckle on that eye, but because of the pressure and detachment Jai has also lost sight in that eye. Jai does have some sight in his left eye but as it is extremely myopic, Jai can only see to the end of his nose.
Jai has a wonderful, full life at home. He is independent to an extent at home but he still requires a lot of support. Jai’s home life consists of me (mum), Jai’s dad, and Grandparents on both sides. He also has one uncle, three aunties, 17 cousins and 5 godparents and all of these people feature heavily in his life. There are barriers with having a blind child at home, mixed with a majority of all the people in our family being profoundly deaf – which causes communication barriers for us all, not only Jai.
When it comes to Reading books from Living Paintings, Jai is able to do this with anyone, no matter of their disability. Jai is able to feel his way around the book, and direct anyone that cannot hear or speak the story. Using the DVD enables Jai to take the lead in reading with Dad, but when he is reading with Mum she is able to talk through the book which allows the characters to come to life by acting out their voices and actions, which entices Jai into reading a lot more. The books have been adapted so well, allowing the main characters and objects of the book to come to life. One book can take days to read with a VI child especially one that wants to feel every page.
Jai has such an active imagination, which is brought to life through these books, he also memorises the stories and takes them to his school to act out to his friends in the playground. His school is especially for visually impaired children and Jai and his friends have created a story about going to the moon. When Jai received Goodnight Spaceman from Living Paintings, he was unable to put it down, his imagination went into overdrive, as he was able to feel the planets, rockets, moon and the spacesuits. He truly believes he will be the first blind child on the moon!
It is extremely important to us as a family that Living Paintings continues with the highest support especially for VI readers. We cannot thank Living Paintings enough for bringing our child to life through these books, and for this we are eternally grateful.”
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