The parents of a north-east teenager who died after a lifelong battle with a hyper-rare genetic disorder have paid tribute to their “happy, sunny boy.”
Greg Henderson, of Newtonhill, was just three when he was diagnosed with the incurable Aicardi-Goutières syndrome (AGS) – a condition that causes damage to the brain and skin.
Doctors told his heartbroken parents Victor and Carol that their severely disabled son, who could not walk or talk, was unlikely to live past the age of eight.
And despite his condition keeping him indoors from October to April, the youngster defeated expectations and managed to help other disabled children across the region.
But after picking up several infections, Greg died at the Royal Aberdeen Children’s Hospital last Thursday. He was 15.
Last night the Woodlands School pupil’s parents told of the everyday battles their “little hero” faced, and how he managed to inspire others to raise thousands of pounds for disability charities.
Greg also worked with occupational therapists at the Robert Gordon University in Aberdeen to give them hands-on experience working with severely disabled children.
They also revealed that they made sure Greg, of Newtonhill, lived his life to the full by taking him to Disneyland and to visit Santa in Lapland.
Mrs Henderson, 50, who was a business studies teacher at Cults Academy until 18 months ago when she left to care for her son full-time said: “He’s always had what we knew would be a life-shortening condition.
“In the first few months of life he was just feeling poorly but we couldn’t figure out what was wrong.
“We had a neurologist come up from Glasgow who told us that he would have a short-little life and that they might not even have a name for the condition it was so rare.
“A symptom of AGS is very red sore skin that is activated by the cold. He couldn’t go out of the house between October and Easter.
“It was because of the problems with his skin that we got the clinical diagnosis of AGS when he was three.
“Basically we had a baby who was very dependent on us for his whole life.”
Greg and his family campaigned tirelessly for a number of charities throughout the course of his short life.
These included PAMIS and their campaign for more public toilets for disabled people as well as hospice charity CHAS.
Mr Henderson, 51, an accountant in Aberdeen said: “We’ve had a lot of positives for Greg and his life. We’ve not only raised money but also awareness of disability.”
A celebration of Greg’s life will be held at Aberdeen Crematorium on Monday at 11.45am.
Donations for CHAS, Woodlands School, where he spent the last five years of his life, and PAMIS will be collected.