A teenager who was only the seventh person in the UK to be diagnosed with a rare disorder has lost his fight for life.
Tom Sturgess, of Coppice Close, Chorley, died on December 8, just three days after his 18th birthday.
He is survived by his parents, Pete and Kate, and his younger brother Charlie.
Tom was born by Caesarean section and was a happy, bouncing baby.
But at 11 months old, following an ear infection, he started to lose his balance and developed the characteristics of cerebral palsy.
His movement was severely affected and he could no longer walk, stand or sit up, and lost all speech apart from squeals of joy.
He attended Moorfield Nursery as a toddler and took part in many Scout camps and activities, as his parents were both involved in Scouting.
Tom joined Beaver Scouts at the age of six and progressed through the movement, finishing as an Explorer Scout on his 18th birthday.
His dad, Pete, said: “He was feisty and a young man with attitude.
“Right from the beginning he made a big impression on all who worked with him.
“Tom laughed at the ridiculous. If someone tripped or said something they shouldn’t, he would be the first to laugh. He had a wicked sense of humour.”
He enjoyed nights away from home at Long Copse respite centre, in Astley Village, and got involved with Long-Shaw Kids Fund, a charity helping to enrich the lives of disabled children.
Tom also represented young people with disabilities on the Integrated Health Team Panel for the local authority, attending meetings at County Hall and surprising everyone with his views on access to services for young people with disabilities.
Despite not being able to talk, he always managed to get his point across.
Tom enjoyed taking part in many activities, including sailing, power boating, climbing, abseiling, skiing, canoeing, arts and drama.
He mostly enjoyed good health, but had eating problems in the last few months and developed illnesses and infections.
He spent four weeks in Chorley Hospital in October, missing the holiday of a lifetime to Florida funded by charity Hopes And Dreams.
He died peacefully in his sleep.
Pete said: “Hundreds of people have been in touch with the family to say just how much they’ll miss his smiling face and his cheeky grin.
“His presence would always light up any room.”
It was only earlier this year that doctors discovered Tom’s parents both have a fault on the same gene which caused his disease.
It is so rare that it does not yet have a name and Tom was the seventh person in the country to be diagnosed.
His brother, Charlie, developed identical problems at 11 months old, though was not as severely affected, and was the eighth person with the disease.
Tom’s funeral will be held at 2pm on Thursday at St George’s Church in Chorley, followed by cremation in Charnock Richard at 3pm.
Donations can be made in Tom’s memory to Long-Shaw Kids Fund at www.longshawkidsfund.co.uk.