Gareth Alun Hughes never uttered a word in his short life but those who knew him remember clearly how he spoke to them: with great big belly laughs, infectious giggles and a roar like a lion during mealtimes at school.

The ten-year-old, from Southampton, died on June 18 after bravely battling a rare, incurable brain disease — and his parents told yesterday how their "little angel" taught others to accept those with disabilities.

Gareth defied the bleak two to five year prognosis given by doctors when he was diagnosed at the age of two with Alexander Disease.

The little-known neurological condition meant he would never walk or speak and would have to be fed with a tube through his stomach.

But that didn't stop his dad Ifor, mum Jacintha and brother Evan from pledging to give him the best life possible and to include him in everything they did as a family.

"We think he was a little angel," Mrs. Hughes, 47, told The Royal Gazette. "He taught a lot of people a lot of things, such as patience. I think he just showed us how having a disability is not such a big deal. Everybody is different."

Mr. Hughes, 46, said: "We are all here for a reason. I think Gareth's reason was to help other people appreciate that we are all different but we are all special in our own way."

Gareth was a Bermuda Day baby, born on May 24, 1998. The first inkling that anything was the matter was when he had a seizure aged six months.

The family travelled to Boston for a brain scan where it was discovered he had an abnormality affecting the white matter in his brain, one of the leukodystrophy disorders.

It took another two years and the help of the US-based United Leukodystrophy Foundation before Gareth was diagnosed with Alexander Disease.

Mr. Hughes explained: "It is very, very rare. At that stage, when he was diagnosed at about two-and-a-half, there had been less than a hundred documented cases in the world. At the Children's Hospital in Boston they have to give you the worst case scenario in terms of prognosis. They'd indicated that it was probably two to five years; that was a pretty hard pill to swallow."

But the doctors hadn't reckoned on Gareth, who, as 11-year-old Evan testifies, "fought a good fight for ten years".

He attended Warwick Pre-School for two years before becoming a popular student at the Dame Marjorie Bean Hope Academy. School principal Bonnie McGlynn told the hundreds who attended his funeral at Holy Trinity Church in Hamilton Parish on Tuesday: "There is not one staff member who could say that Gareth did not fight and give us his all – at all times. We were constantly in amazement of our boy when he would break out in giggles and give us his award-winning smile."

Though Gareth couldn't speak, he was well aware of the world around him and more than able to communicate, making countless friends wherever he went. Ms McGlynn told mourners how he stunned the school nurse one day while they were listening to a CD of animal noises by emitting a gigantic roar. "From then on they had special 'roaring' sessions," she said.

Mr. Hughes told this newspaper his son was a "wonderful, positive guy" who loved music, especially the flute, while his wife remembered Gareth's "bright eyes" and fondness for the Teletubbies TV show.

His family say that from the day he was diagnosed they made a conscious choice to live every day with him to the full.

"That was the whole objective his whole life — keep him happy," said Mrs. Hughes.

The youngster's physical condition deteriorated from the age of two and his challenges included a displaced hip and scoliosis.

His parents — Mr. Hughes is head of compliance at HSBC and his Trinidadian wife is an accountant at Bermuda Stock Exchange — opted for him not to have surgery due to the painful rehabilitation he would have had to endure.

Instead, they concentrated on the positives and gave Gareth the best quality of life possible with the help of family, the medical staff who cared for him, church friends, the Committee of 25 charity and his school community.

Last week, Gareth suffered a bout of pneumonia and died in the car on his way home from the doctor's surgery with his mum.

Mrs. Hughes said: "We had decided a long time ago that we didn't want tubes down him to help him breathe. It was going to be this that would take him."

His family have been touched by the outpouring of love and sympathy since and were amazed at the number of people who attended Tuesday's service.

Mrs. Hughes said Evan often says he wishes Gareth hadn't been disabled but then shakes his head and changes his mind.

"He says in another way he wouldn't change a thing. For us, he was just our angel. An angel sent to us and he's up there somewhere."

* Donations to the Committee of 25 for Handicapped Children can be sent to PO Box HM 927, Hamilton HMDX and to the Friends of Hope Academy at Suite 1230, 48 Par-la-Ville Road, Hamilton HM 11.

Gareth's classmates pay tribute

A poem written for Gareth by his classmates at Dame Marjorie Hope Bean Academy:

Graceful: The way Gareth was every day

Amazing: He was one of a kind

Royal: Gareth was Prince of Classroom 1

Example: He showed his classmates how to stay calm in the midst of chaos

Tenderness: Gentle and loving

Honour: Classroom 1 is proud to have Gareth as one of their students.

Alexander disease factfile

• Alexander disease is one of a group of neurological conditions known as the leukodystrophies: disorders that are the result of abnormalities in myelin, the "white matter" that protects nerve fibres in the brain.

• Its prevalence is unknown but it is extremely rare. It is thought that between about 300 and 500 cases have been reported since the disorder was first described in 1949.

• The majority of sufferers have a mutation in the gene that makes glial fibrillary acidic protein; most of the mutations occur without any known cause and are not inherited from parents.

• There is no cure for the disease and most children with the infantile form are not expected to survive past the age of six. There is no standard treatment.

• The disease results in mental and physical developmental delays, followed by the loss of developmental milestones, an abnormal increase in head size and seizures.

• It occurs in both males and females and there are no ethnic, racial, geographic, cultural or economic differences in its distribution.

Information from the National Institute of Neurological Disorders and the National Library of Medicine in the US.