On 31 October 2007, when results of the skin biopsy were received,
Tom was diagnosed with Cockayne Syndrome.
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.