Jai

Jai was born in 1977, a beautiful, alert baby. However, as the weeks went by, there was obviously something very wrong as not only was there no physical progress being made but he was actually getting weaker and floppier. No one seemed to know what the problem could be and it wasn’t until over a year later that the diagnosis of spinal muscular atrophy was made at Great Ormond Street Hospital. (The details of the disease are explained in the SMA section.)

 

Whilst he became so weak that he could barely hold his head up, his obvious intelligence demanded that as much as possible be done to give him the best quality of life. With the aid of a metal chest brace and a new design of wheelchair, he was eventually able to sit up and enjoy small toys on a tray in front of him. Not only that, but he was to have adventures, such as going to Disney World in Florida, thanks to the Cinema and Television Benevolent Fund, being invited to the wedding of Prince Charles and Lady Diana Spencer, and making appearances on television and in the cinema as part of awareness campaigns.

 

By the age of almost three, he was asking questions like, “When I was in your tummy, Mummy, could I see your bones? Are there people on other planets? Is it really the clouds that are moving or is it us?” An IQ assessment of 152 was made just as it became the law to allow disabled children to be educated in “normal” schools.

 

Jai attended Love Lane School in Cowes on the Isle of Wight where, with the help of a dedicated assistant, he enjoyed being part of everything that went on. His kindness, ready wit and the complete absence of any resentment of his situation meant that he was not only readily accepted by the wonderful staff and pupils, but he would often be the only boy at the girls’ birthday parties!

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However, he continued to grow weaker and, on 6th May 1986, he lost his last battle with pneumonia. A bright light went out and the world became a sadder place.