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 ospital 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 is small in stature, has problems seeing and hearing, has difficulties with mobility and feeding and is photosensitive. He is also an extremely happy and loving little boy.

He has a huge sense of fun and a genuine love for life. Thomas likes nothing more than spending time and laughing with his big sister Ellie, he enjoys bike rides on his adapted tricycle, swimming and playing with his cars, computer and magnets. He enjoys school where he has many friends.

Although Cockayne Syndrome has presented Tom with many challenges, he lives his life to the full. He is a constant source of joy and pride to his family and is a true inspiration.

Tom Laurie, Our little friend won his fight against Cockayne Syndrome and is now free to run and play in heaven.


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