Jenson Belkevitz is a lively, fun and endearing little boy. At just four and a half years old, he was diagnosed with Late Infantile Battens. Jenson has already gone blind and is starting to experience other symptoms of the disease. Sadly he is unlikely to live to see his teenage years.

Despite his condition, he attends mainstream school in Newport Pagnell where he is a popular member of his class and loves to play with the other children. He adores trains and music and has enjoyed family holidays at holiday parks specially adapted for blind children, with his parents and two older sisters.

One year on from his Batten diagnosis Jenson is still finding amazing ways to adjust to his disabilities but he is a shadow of the boisterous little boy he used to be. These days, although he chatters cheerfully and incessantly, the sounds he utters are mostly baby sounds which only make sense to his close knit family. He has epilepsy – tonic-clonics where he leans or falls to one side. He cannot control his painful shaking legs. He also has Parkinson’s gait which gives him an uneven shuffling walk. And his walking is now severely limited. After a chest his condition has deteriorated so that he can no longer climb up the stairs or walk more than a few steps. He cannot be left alone and because of his constant seizures, his Mum Cheri sleeps with him.