Thomas was born at home in May 2004, a second child and brother for Eleanor. Tom proved to be quite a tricky baby – he seemed to cry constantly, visited hospital for frequent hearing tests and wore splints to correct bilateral talipes.
After the initial challenging months, Thomas became a happy, smiley child. He loved playing with cars, trains and was very sociable. However, there were concerns about Tom’s developmental progress and, at 18 months of age his doctors began to look for a cause for the problems.
Soon, Thomas had undergone numerous blood tests, a lumbar puncture, a brain scan and finally a skin biopsy. On 31 October 2007, when results of the skin biopsy were received, Tom was diagnosed with Cockayne Syndrome.
Like many of the children with Cockayne Syndrome, Thomas was small in stature, had problems seeing and hearing, had difficulties with mobility and feeding and was photosensitive. He was also an extremely happy and loving little boy.
He had a huge sense of fun and a genuine love for life. Thomas liked nothing more than spending time and laughing with his big sister Ellie, he enjoyed bike rides on his adapted tricycle, swimming and playing with his cars, computer and magnets. He enjoyed school, where he had many friends.
Although Cockayne Syndrome presented Tom with many challenges, he lived his life to the full. He was a constant source of joy and pride to his family and was a true inspiration.
Thomas lost his courageous battle with the condition on the 19th February 2014. He died peacefully in Helen and Douglas House Hospice, Oxford surrounded by his family.