THE 1,000 or so children in the UK who are HIV-positive bear a double burden. In addition to living with a chronic medical condition that may require them to adhere to a strict medication regime, they and their families must also endure in silence.

Not for them the shared sadness and support of friends and community that is experienced by many of the 1,500 children a year who have cancer diagnosed. HIV is still a secret illness and the majority of affected children do not even tell their schools.

Jed Marsh, of Body & Soul, the only charity in the UK dedicated to supporting HIV-positive children and young people, says: “The illness interferes with all aspects of their life — through side-effects of their medication or the regular health visits they have to make. In school, they are often seen as the child with ‘unexplained irregular attendance’. With any other illness there would be open-armed support for them.”

Body & Soul, based in North London, describes itself as a “family” which gives young people an opportunity to meet others who are HIV-positive or who have family members who are affected. With a staff of just six (three full-time and three part-time), it relies heavily on a large body of volunteers, many of whom are teachers. Once a week the charity opens its door to children aged 10 to 12, who meet in a group known as The Base. Each session starts with “circle time” for talking, leading to a range of activities that can range from drama, creative expression and problem-solving to sports.

“We deal with issues such as trust and secrets. At this age most children do not know about being HIV-positive. The ages of 9 to 12 are the watershed when many become aware. Many just work it out for themselves because they are taking so much medication or because they have found literature around the house.

“In some cases, we have been the first ones to tell them. How do we do that? Well, the only way, really, is slowly,” Marsh says.

A separate Base group exists for 10 to 12-year-olds who know of their HIV status.

The charity also provides access to complementary therapies, help with behavioural problems, study support and practical assistance with anything from applying for a hardship grant to dealing with school applications and immigration appeals.

The vast majority (more than 90 per cent) of HIV positive children in the UK were infected through mother-to-baby transmission and most (60 per cent to 70 per cent) are of African origin.

“Immigration has recently become a big issue for us,” Marsh says. “In the past immigration authorities would take account of a child’s HIV status, but I have recently been helping a mother with a four-year-old, both HIV-positive, who have been refused leave to remain and told to return to Nigeria. The Home Office says that the drugs are available there, but the problem is that most people could not afford them.”

Older children, aged 13 upwards, who know of their HIV status or that of a member of their family, are catered for by the charity’s Teen Spirit group. This tackles the every day problems of adolescence — hormones, growing up, school, relationships — and is also a place where the youngsters can talk about HIV and Aids.

Sally, aged 14, says that Teen Spirit has become like a family. “If Body & Soul hadn’t been there for me and my sister when my mum was dying, I don’t think we would have coped. Soon I need to tell my little sister that she has what my mum died of. It’s going to be hard but I have thought a lot about it and know that Body & Soul will help,” she says.

Jane, 16, says: “I had so much bottled up inside that I couldn’t share with my friends. Here we can talk openly and don’t have to suffer in silence. My confidence has definitely improved. I might have HIV but I want to live with it, and I want to make something good out of it. If I can teach one person something about HIV then I’ll know I’ve done well.”

It is precisely this upbeat attitude that the charity is now trying to capture with a poster, television and radio campaign that aims to break down the hostility and ignorance usually associated with HIV and Aids with the message “a smile is a gift”. The campaign features celebrities including Thierry Henry, Emma Bunton and Nick Park’s Wallace & Gromit characters, pledging to give their smile to a child. Members of the public are invited to do the same and to make a donation by sending a text message.

There will also be a family day in Trafalgar Square, London, on June 2, featuring performances from five West End musicals and directed by Geoff Posner, director of last year’s Live 8 film. An exclusive VIP fundraiser on the same evening will be hosted by the actor Jimi Mistry, while the Radio 1 hip-hop DJ Tim Westwood will host a nightclub event.

Most of the creative work and media space has been donated free, as have celebrity appearances and endorsements. “We’re hoping to spread a brighter message about HIV,” Marsh says.