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Children With AIDS Charity (CWAC) is Fifteen Years Old

For CWAC, the year it all began was 1992. Any mention of the word HIV or AIDS continued to cause wave after wave of controversy as the bewildered public sought to blame, stereotype and run away as fast as they could, from anything associated with this as yet little understood virus.

Somewhere between the ongoing media outcries and medical professionals struggling to come to terms with the reality of HIV and AIDS a small but growing number of children were being born HIV positive. These babies were viewed as having few prospects and no future back then. This was the first generation to be born with the virus. Medical science knew nothing about coping with them. Any drug therapy had been developed based on data from adult patients. There were next to no units for families – and this was, more than almost any other, a disease that was going to infect and affect whole families. Some people even took the sprightly view that these children had no right to live. Others, who were capable of showing some compassion (but who were no less misguided) were of the belief that HIV in children was different somehow, the inference being that children are innocent – as if adults were somehow guilty of a crime if they themselves became infected.

To top it all, the adored Freddie Mercury publicly announced that he had AIDS and then died the day after. People were gob smacked. I was only eighteen years old, had just moved to London and copied all my brother’s music albums for myself, Queen included. I remember thinking, ‘well at least he was loved; people will feel sad and mourn him. If people can feel sad for Freddie then they’ll learn to apply understanding to all the others living with HIV surely.’ I have always been hopelessly optimistic by nature!

Meanwhile, a tiny group of parents and health professionals at St. Mary’s Hospital had decided enough was enough. Something had to be done for those children living in the shadow of HIV: those faced with the terrifying prospect of losing their parents, their friends and their own lives; those who were forced to keep their health condition a secret until the day they were expected to die. Children who did disclose their status were routinely shunned, rejected and excluded by the communities in which they lived. Isolation and shame were the norm and violence was not uncommon.

Rebecca Handel, whose daughter Bonnie was being cared for at St Mary’s, met Jo Dodge, the Family Coordinator to discuss the shortage in existing provision of services for children. Together with the paediatric team they decided to start an organisation that could respond to the practical, emotional and educational requirements of children, their families and the wider public in general. Rebecca was white, heterosexual, middle-class and Jewish so she did not fit neatly into the usual HIV-positive stereotypes either. Whilst HIV was largely touted as a ‘gay’ or ‘black’ scourge that suitably punished to death those people who partook in same sex relationships and those whose skin was simply the wrong colour, she brought home the truth that in actual fact, HIV simply happened to mothers, fathers, daughters, sons, brothers and sisters. The existence of the Handel family flew in the face of public perception. Bonnie, struggling courageously with ever failing health, was overjoyed when the late Princess Diana started writing letters of hope, empowerment and encouragement to her. The essence of CWAC was born.

A committee was formed in 1992. Bonnie, then aged twelve, died in St Mary’s Hospital the following December. The charity continued to run from the hospital for some eighteen months, becoming officially registered in 1993. It was led by extraordinary people who were already in full time jobs or ill and working from a bed, determined to keep the charity afloat. Rebecca had dreams on a scale to match the kind of dreams that Martin Luther King had. And why dream, if not to turn that burning desire into reality?

Foremost in her mind, Rebecca knew the charity would have to raise enough money to hire a full time Administrator, someone who would be able to carry on the work after her death and establish a vital source of services for children.

In 1994 CWAC recruited its first ever Administrator, David Simpson. It all sounds so straightforward but at the time a recruitment advert, if being honest, should have read something like: ‘Applications desperately sought for the single post of Chief Executive, Press Officer, Education Officer, Fundraising Co-ordinator, Services Co-ordinator, Bookkeeper, Development Consultant, Office hunter, Receptionist, Company Secretary and Volunteers Co-ordinator. Salary just enough to get by on.’ Needless to say the right person was recruited. Rebecca Handel, reassured by the fledgling team that had been forged, died on New Year’s Day 1995.

All the twelve hour work days, the evening and weekend work that followed David’s recruitment, and numerous others since, as well as a host of diverse volunteers and management committee members, have been key to CWAC’s development, without whose support such immense growth simply would not have happened. The times may have changed but all these people, both adults and children are never far from the thoughts of those associated with CWAC today.

It is with particular pleasure that I have watched our youngest work experience participant (aged fifteen no less) pass through the office recently – no different to any other boy of his age, yet somehow wise (and talented in the art of graffiti) beyond his years.

For all the successes that CWAC has lived through and all the children and families that we have helped and continue to help, somehow there are always more and more that come to us in need of support. Children still have to cope with grief, adoption, fostering, poverty, prejudice, exclusion, and the uncertainty of growing up in a world where bouts of prolonged illness are best kept hidden.

Not that this makes a child any kind of victim in the big bad world we all inhabit as best we can. The word rebel is a more accurate term to describe some young people. To me, some are rebels in the making by default: rebel carers; rebels that fight to return to school, go to college or get into university, sometimes without a parent or a penny to their name; rebels who insist on speaking out sometimes and who damn the consequences even if it means getting beaten up or excluded from school; rebels who, poverty stricken, sometimes walk a line too close to the criminal justice system and need to be plucked from the waiting jaws of youth prison. Some of these children are more sickened by the way in which their communities have treated them and their families, than by having HIV in itself. So it’s really not surprising that some children in transition to adulthood have grown angry, frustrated and may not naturally comply with the strict medication regime expected of them.

They have learnt to be masters at hiding fear and being young, often feel patronized and misunderstood. They all have untapped, unlimited potential but have experienced very little consistency in their lives. When these children are given some of the resources that should never have been denied them the changes that occur are astounding. A strong team spirit can light a fire in the mind of a child. A laptop will radically improve a young person’s reading, spelling, emailing and organizing abilities in a week. Talk of equal opportunities and their eyes snap to attention, the veil dropping bit by bit to reveal an unmasked glimmer of hope.

Today CWAC can boast a spacious office that benefits some 2,500 children and their families annually but the most remarkable development in the field of paediatric HIV over the past fifteen years has been the development of medication. I ask Mathew, a source of relentless energy and innovative ideas, what it was like for him fifteen years ago.

‘Me and my brother had to take horse tablets…that’s what everyone used to call them. It’s hard to get a child to take medication on a timed schedule anyway but to make it almost unbearable, the tablets and syrup were absolutely disgusting in any shape or form.’

He is now twenty five years old, a father, and when he’s not at work keeping the rest of the team (young and old) on their toes, he can generally be found looking after his son (who does not have HIV), playing football, raving the night away on the UK club scene or romancing his girlfriend.

I ask him how big the horse tablets were. He demonstrates by stacking three 2 penny coins on top of each other and shoots me a quizzical look. ‘Imagine getting a child to swallow or chew tablets that big every day. They were bright orange and we were told they were orange flavoured but they weren’t at all. They were rank. Some kids had really bad side effects too. And they had to go through all that everyday and not breathe a word about what was going on when they were at school.’

Mathew suddenly looks as if he’s a million miles away. ‘Our mother had died and we were adopted. My brother died when I was thirteen. He’d had enough of the meds and wouldn’t take any more of the AZT or Septrin. He was sixteen. A couple of years after that medication improved a lot. Like now, I can take a whole combination in a few small pills.’ He adds thoughtfully, ‘I still hope for the day I only have to take one tablet though.’

By 1992, 395 children had been reported as HIV infected. In 2007 a total of 7,243 children have been born in the UK to HIV infected mothers. Of these, 774 have been diagnosed with HIV infection. There have been 1,538 diagnoses of HIV in people who acquired the virus from their mothers and thousands more young people who have acquired the virus from sexual contact.

I talk to Kate Copstick, one of CWAC’s founding trustees who became involved in the hope of persuading the ‘outside’ world to do something to dispel its ignorance and see past its prejudices. ‘Education has always been a cornerstone of CWAC’s work’ she says.

‘I was guilty of my own kind of ignorance. In the kind of world I lived in, although announcing that you were HIV positive would not exactly have had loved ones coating you in chocolate and licking you all over, neither would it have resulted in you being ostracized, physically abused or finding excrement pushed through your letterbox as had happened to others. I thought it would be easy to go out, find some families, do some interviews and change the way the world thought. The BBC had given me the go-ahead to produce a documentary about children, families and HIV/AIDS.

‘It took me 18 months to find anyone who was brave and generous enough to talk to me on camera.  I have letters from families and from young people who wanted so much to speak out but who could not risk it. I still have the letters I got from the people who had had their right to a voice taken away from them. One young boy in particular I remember wrote, “Having AIDS doesn’t feel like being ill, it feels like being bad.” 

Copstick isn’t the kind of person to give up and she eventually made the program. It was called Positive Thinking and it was a life changing experience. ‘Working with CWAC has been wonderful. And I feel we have done so much good over the years. We have poured out so much information in so many ways and raised millions of pounds for children experiencing immense hardship. You would think, as the superheroes say “our work here is done!”

Then she shakes her head in dismay. ‘It’s not just the fact that HIV is the fastest growing serious health condition which is awful enough. The worst thing of all is that I know if I made that same documentary today, it would be just as hard to find children and families who would feel comfortable about going public. And it would be just as impossible for me to guarantee that nothing bad would happen to them. I would love to close CWAC down with a big 15th Anniversary bash. But we can’t because CWAC is needed more than ever.’

She says it all really.

Lesley Naylor
Administrator

Help A London Child Awards CWAC A Grant

16th April 2007 – For immediate release

Children With AIDS Charity
Calvert House, 5 Calvert Avenue
London, E2 7JP
T: 020 7033 8620 F: 020 7739 3902
Email: info@cwac.org Web: www.cwac.org

Children With AIDS Charity is one of 252 children’s and young people’s projects across London, currently sharing £ 439,114 awarded by Capital 95.8’s Help A London Child. 2007 also marks Children With AIDS Charity’s 15th anniversary.

Capital’s Breakfast Show presenter Johnny Vaughan said “The impact HALC has had on the lives of underprivileged children and young people cannot be overestimated. I’ve had the opportunity to see first hand the great work that Capital’s charity does. Being a father myself, I realise how crucial it is for charities to get the funding they depend on.”

Children with AIDS Charity (CWAC) were set up fifteen years ago and their origins began in London when a group of parents and health professionals met to discuss the shortages in service provision for children infected and affected by HIV. They set up a charity that could respond to the emotional, financial and educational needs of children living with HIV. At that time the majority of children died before their 10th birthday.

Fifteen years on, this sombre picture has changed dramatically thanks to the introduction of triple-drug medication in 1997. Today, most children born with HIV, who are able to access treatment, are able to live into their teens and on into adulthood. However, whilst the prognosis has greatly improved, the difficulties faced are still extreme, such as poverty, bereavement, fostering, adoption, and being told about HIV (disclosure). Many children care full time for sick relatives, worrying about their health to the point of refusing to go to school, and may never have had a break from caring, or may be socially isolated, or be on medication themselves. 90% of all children infected or affected have been bullied at school due to having disclosed their own or a family member’s HIV status and have had problems attending and performing well.

HALC’s grant will be used to enable up to 30 children to take a respite break in August 2007. It will provide an opportunity for the most isolated, anxious and withdrawn children to make friends and have fun in a countryside or seaside location far from the stresses of city life. Lesley Naylor, CWAC’s Administrator said, “We are delighted. Group respite trips form an essential element of community based support services and are a welcome alternative to institutional settings, much preferred by children and their families.”

Grant monies come from HALC fundraising events which last year included the BUPA Capital 10k, Capital Rocks, Dover Street Dinner, a trek to Sri Lanka and the annual HALC On-Air Appeal.

For further information contact:

Lesley Naylor at the above address, or:
Jemma Pike – PR & Communications Executive
Capital 95.8’s Help A London Child
Tel: 020 7054 8387
Jemma.pike@gcapmedia.com

New Office Accommodation and Contact Details
CWAC moved to new office accommodation on 23 February 2007. Situated in Shoreditch, London just along from the old office, the new office affords us increased space in two distinct areas. Due to moving there will be no Spring newsletter, but the Summer one will be available shortly. Our new details are:
Calvert House
5 Calvert Avenue
London E2 7LP
Phone 020 7033 8620
Fax 020 7739 3902
For staff direct dial numbers see the Contact page.

Christmas CWAC-ker
This Christmas CWAC has four different designed packs of Christmas cards on sale at Paperchase shops throughout the UK. Available in packs of 8 for £3 with a 50p donation to CWAC, packs of 10 for £2.75 with a 45p donation and in a cube of 24 mini cards (in 4 designs) for £3.50 with a 40p donation.
CWAC is also selling cards in 2 designs. Available from the office in packs of 10 for £5 or 20 for £8.
The highly anticipated CWAC Calendar is also available in a black and white A4 wall format. Cost: £5 + p&p.
Help support CWAC by purchasing these products to give to your friends and family to spread the word about CWAC.
Our Christmas Is For Children appeal asks you to make a donation to CWAC this Christmas instead of buying a present. In return who you made the donation on behalf of will receive a gift certificate and our latest newsletter. Full details are on the Home page.

World AIDS Day 1 December 2006
This WAD CWAC has several awareness and fundraising initiatives.

• CWAC is appealing to clubs, pubs, bars, theatres and student unions, etc to dedicate a proportion of entrance fees or proceeds made on the evening of 1st December in support of CWAC beneficiaries.
• Support the Dagoretti Intervention Feeding Programme in Nairobi, Kenya for children infected and affected by HIV/AIDS by making a donation to “Take a Village out to Dinner”.
• Buy a beaded ribbon and show your support to prevent the spread of HIV, end prejudice and enhance the lives of our young beneficiaries.
• Attend our charity dinner at Glaister's Restaurant, 4 Hollywood Road, London SW10 9HY at 7pm.

All proceeds from your WAD donations, beaded ribbons and charity dinner will go directly to the Dagoretti Intervention Feeding Programme.

World AIDS Day 2006: “Take a Village out to Dinner”
This year the UK theme for World AIDS Day is: YOU, ME, US www.worldaidsday.org.

CWAC commemorated the day by supporting the Dagoretti Intervention Feeding Programme in Nairobi, Kenya for children infected and affected by HIV/AIDS by “Taking a Village out to Dinner”.

• 150,000 children are reported to be living with HIV/AIDS in Kenya with over 1 million orphans due to AIDS alone (UNAIDS Reports).
• £36 takes a village out to dinner and would buy enough food to feed 50-100 children.
• £150 will support the programme for a week buying nutritious ingredients to help feed these vulnerable children who sometimes go to bed hungry due to lack of resources to obtain food.

Food for all the children for one week: £150



What your money will buy:
“Ugali” - The national dish of Kenya made from maize flour and water. Ugali is very nourishing and can vary in consistency from porridge to dough like substance similar to Italian polenta.

Help CWAC support this incredible project by selling beaded ribbons, e.g. in your office, school, church, youth club or pub. Please see below to obtain the beaded ribbons and watch out for details on events that are taking place around World AIDS Day.

Beaded ribbons can be obtained singly or on a sale or return basis for packs of 10. Ribbons are to be sold for £1 and the proceeds returned to CWAC. Contact us or fax 020 7247 9120 (Attention: Amena) to place orders now.

Alternatively you can show support by donating only £3/month or £12.50/month using this form.

Steve Gets Walking For Kids With AIDS
From the Camden Gazette 12/7/06, by Charlotte Tamvakis

Royal Free nurse Steve McKenna will hit the streets of London later this month to raise hundreds of pounds for charity.
The 38-year-old, of Queen’s Crescent, Kentish Town, is one of 22 Camden residents taking part in Crusaid’s Walk for Life, Europe’s largest HIV and AIDS fundraising event.
He said, “I now work as a nurse in the emergency department, but part of my job before was looking after children with HIV or AIDS and their families.
“I am hoping to raise £250 for Children With AIDS Charity (CWAC), which organise holidays for children with the disease. It’s a small charity and I want to raise its profile.”
The 10km Walk for Life on July 30 takes some of London’s top sights – including Big Ben and the London Eye.
Mr McKenna, who has worked at the Royal Free Hospital in Pond Street, Hampstead, for five years, said “I’m always on my feet at work and I consider that as my training for the walk.”
And he will not have much time to recover either – just three days later he joins a group of 11 to 14-year-olds on a CWAC adventure holiday as camp nurse.
He said: “Just £1 is enough to pay for leaflets to be sent to a class of 40 children, £2 is enough for a call to an outreach worker and £10 pays for a child infected or affected by HIV to go on a day trip.”
To sponsor Mr McKenna, go to www.walkforlife.co.uk/stevemckenna .

The Impact of Immigration and Asylum on Children and Young People Living with HIV

9 October 2006, London, 9.30am – 4.30pm
& 12 February 2007, Birmingham, 9.30am – 4.30pm

Developed in response to challenges experienced by practitioners, the National Children's Bureau has developed a unique one-day course that will examine current policy, legislation and practice issues relating to children, families and unaccompanied minors who have uncertain immigration status or issues with visas and are additionally living with HIV.  The course will include looking at current challenges in practice, and will aim to provide practical ways in which professionals can strive to meet the needs of this group across the sectors.

Who should attend?
This course will be of benefit to practitioners across social care services and the health and voluntary sectors.

To book your place please return the booking form by post, email or fax to NCB Training, 8 Wakley Street, London, EC1V 7QE. Fax: 020 7843 6442, Tel: 020 7843 6084/1906, Email: training@ncb.org

Dagoretti and The Promised Land

CWAC trustee Kate Copstick writes about her recent journey to Kenya and CWAC's first exciting international project.

Developing Support Services for Children & Young People

The Children & Young People HIV Network, with the support of Children with AIDS Charity and the African HIV Policy Network (AHPN), have produced a handbook, ‘Developing support services for children, young people and families living with HIV.’

It presents specific issues and offers information and good practice. The Network is running a set of free seminars to launch the handbook and bring together practitioners from Children’s Services, Health, Social Care and the voluntary sector to review present non-medical support services available to both infected and affected children and young people. The afternoon seminars will be a forum to:

- Discuss present service provision in the region
- Build links between providers
- Explore possibilities for further service development
- Explore the possibility of further meetings.

We would encourage participants from generic children’s services, generic young people’s services, adult HIV services, community groups and representatives from health and social services, as well as practitioners undertaking direct work with this group.

If you are interested E-mail: ltoocaram@ncb.org.uk or phone 020 7843 1905/1911.

Press Release 3 May 2006

Jack Petchey Foundation Supports Children with AIDS Charity
Children with AIDS Charity (CWAC) is delighted to receive the financial support of the Jack Petchey Foundation, an organisation that awards grants to programmes and projects that benefit young people aged 11 - 25.

CWAC’s Education department was set up in 1992 to support the educational needs of those caring for children infected and affected by HIV and to educate the general public to reduce stigma surrounding the virus. During this time 50 % of children died by the time they were ten.

A little known fact is that this sombre picture has changed dramatically thanks to the introduction of triple-drug medication in 1997. Most children born with HIV, who are able to access treatment, are now able to live healthily into their teens and on into adulthood.

CWAC’s Education department has evolved to support the career development needs of young people in transition to adulthood and the support of the Jack Petchey Foundation allows CWAC to do just that. Whilst the prognosis has improved for young people living with HIV, the difficulties faced cannot be underestimated: poverty, bereavement, fostering, adoption, unemployment and being told about HIV (disclosure) continue to have an unwelcome impact. Most young people living with HIV are based in metropolitan areas, due to the availability of support services. CWAC’s office, based in East London, provides an ideal environment for skills transferral to take place. 

CWAC will be funded for 2 years, matched by the Bridge House Trust, to promote social inclusion by providing further education and job opportunities to infected and affected young people.

The Jack Petchey Foundation
Jack Petchey was born in July 1925 in the East End of London, England. From a background with very few advantages he became a prominent businessman and property developer.

The Jack Petchey Foundation, established in 1999, gives grants to programs and projects that benefit young people aged 11 - 25.  Grants of over £20 million have been given since the Foundation was established in 1999.

“The Jack Petchey Foundation is delighted to be supporting the valuable work of CWAC”, said Lee Thompson, Awards Officer. “The Foundation is all about offering opportunity to young people and encouraging them to achieve their potential – this Project does exactly that.”

For more information about CWAC’s Education Services, please contact Lesley Naylor. Email: info@cwac.org  Web: www.cwac.org   Tel: 020 7247 9115

World AIDS Day, 1 December 2005 was marked with the launch of our new website. It has a fresh new look that is modern and easy to navigate. Much of the information has either been rewritten or is completely new.

The site clearly defines our core services on the How We Help pages, where new content more clearly explains the various projects and services.
In an expanded How We Help section, there are new ways to donate and raise funds for us, including adventurous overseas sponsored cycles and a trek.
Information is now included about the management and staff and how to Contact Us. Our Annual Report and Accounts 2005/06 will be displayed for the first time.

We welcome comments and suggestions about the site to doug@cwac.org. Make sure you visit us regularly.