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.
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.
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.