Terrence Higgins' HIV Trust has helped thousands of HIV patients

This is the man who became famous for the way in which he lived, but also the way in which he died, being the first person to die of Aids.

His name is now synonymous with the fight against HIV and Aids.

But as a little boy growing up in Priory Avenue, Haverfordwest, during the 1950s, he was a shy little child who rarely ventured outside to play with the other ‘rough and ready kids’ around him.

Terrence Lionel Seymour Higgins was born at the old Priory Mount workhouse, Haverfordwest, to Marjorie; his father’s name wasn’t on the birth certificate.

“He wasn’t really a mixer, “ said neighbour Billy Yabsley, who lived on the same street as him as a child.

“We were a rough and ready bunch - football one minute, cricket the next, then we'd be falling out, fighting. But Terry never got involved. He was a quiet boy.”

But as he entered his teenage years he began venturing out to the market hall dances and it was here that locals began noticing his dancing skills.

“I can see him coming down the high street now, with his trousers flapping,” said school friend Angela Preston.

“He had a dancer's walk, as they have that airiness, that floating movement. He would say to me ‘Come on girls…..up you get’ and he’d jive with two of us at a time. To me, he was just Terry who I danced with on a Saturday night.”

After finishing school in the early 60s, Terry - as he was known then - left Haverfordwest to join the Royal Navy.

He returned to the UK and headed to London where he started writing for newspapers and also Hansard, which carries the official reports of the House of Commons' parliamentary debates.

His sexuality was now a major issue in his life, however it remained something that was still impossible to openly admit.

It was in the gay clubs where Terry became friends with Rupert Whitaker and Martyn Butler, the two men who would ensure that the name Terrence Higgins would one day become famous around the globe.

Rupert was 18 when he started a relationship with Terry and was enamoured with his streetwise nature at a time where their community felt marginalised.

"He didn't care about anything and was completely unselfconscious," said Rupert.

"I thought he was just gorgeous. This was the era of the clones... very short cropped hair, big moustaches, strong five o'clock shadow, plaid shirts, tight jeans and builder's boots.

"It was a hyper masculine look and I completely fell for it."

Sadly, both men had HIV when they met, but neither knew.

"He never really talked about it," Rupert recalled. "It was like he was a very passive witness to his own deterioration."

In the spring of 1982, Terry's illness became much more serious and he collapsed in London's Heaven nightclub and was rushed to hospital.

"Only family could visit," said Rupert. "I said 'he doesn't have any family, I'm his boyfriend' and the nurses were cool with that, but the physicians didn't talk to me.

"At the time, a gay newspaper ran this report about what was then 'gay cancer' and pneumonia. We had an idea that this thing was in America but nobody had any idea it was in Europe."

On July 4, 1982 –just 8 months after meeting Rupert - Terry died in St Thomas' Hospital on the banks of the River Thames. He was 37.

Within weeks of Terry's funeral, a group of pals who had nowhere to channel their grief and wanted to help fight this unknown illness formed a trust in Martyn's front room in Limehouse, East London.

"I had this sense that I was expected to be dead already," recalled Rupert.

"So what do I do? Do I just sit around and wait for this to happen or do I actually do something with the time I've got?".

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• Portrait of Terrence Higgins unveiled in Welsh parliament

A portrait of Terrence Higgins which was unveiled in the Welsh parliament

The Terrence Higgins Trust has since helped thousands of people throughout the world and has provided sexual health services like HIV testing, making it one of the world's oldest and leading HIV and Aids charities.

Within 10 years of Terry's death, proceeds of two musical anthems - Queen's Bohemian Rhapsody and Don't Let the Sun Go Down On Me by Elton John and George Michael - were donated to the Terrence Higgins Trust.

Today the Trust is supported by a string of A-list celebrities and members of the royal family.