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Luyanda’s Story: A message for hope for children living with AIDS

UNICEF/South Africa/2009/Jantilal
© UNICEF/South Africa/2009/Jantilal
Archbishop Emeritus, Desmond Tutu introduces his friend Luyando Ngcobo to delegates at the opening of the 4th National AIDS conference in Durban.

4th Nkosi Johnson Memorial Lecture

by Kate Pawelczyk

Durban, 1 April, 2009… Before a capacity crowd seated in chilly Hall 1 of the Durban Convention Centre stood a 16 year old boy who had travelled from Cape Town to share the stage with the renowned South African Nobel Laureate Archbishop Emeritus Desmond Tutu, for the 4th Nkosi Johnson Memorial lecture at the National AIDS Conference and share his story of survival and hope. 

His name, he told the 2500 faces focused on him: Luyanda Ngcobo, and he was born HIV positive.

In 1997, aged 5 Luyanda fell seriously ill for the first time. At that time, he lived in KwaZulu- Natal and the family rushed him to the King Edward Hospital, where he was diagnosed with TB.  Luyanda recalled the terrible pain and his inability to swallow due to the infection that had attacked his young body. 

By 1999 he was feeling better and started school; however he was often too unwell to attend class and by June of that year, he had stopped going to school altogether.  Adding to the family’s trials, his mother, whom he regards as an inspiration, was retrenched from work and the two of them had, of necessity, to travel to Cape Town to seek support from family members there.

Progress for children living with AIDS

Today, thanks to the anti retroviral treatment (ART) programme started in 2002, Luyanda is the bright teenager addressing the opening ceremony of the 4th South African AIDS Conference in Durban. His warm personality resonated with the audience.  There was laughter as he spoke about his love of playing video games and his pride in meeting Deputy President, Baleka Mbethe. 

Then, Luyanda introduced a tinge of sadness to his story, lamenting that there is still no cure for AIDS, a disease he has fought daily for his entire 16 years of life.  “Taking medication every day at the same time is still a big challenge,” he said.  “But I cannot stop”.  

Luyanda is a testament to the progress for children living with AIDS that has been made since 2000, when the late Nkosi Johnson stood in the same place, and asked South Africa and the world to take action for children living with HIV and AIDS.   Echoing that sentiment, the archbishop said, “We are engaged in a new struggle, one that threatens to decimate us. “

Some 300, 000 children are living with HIV

The Harriet Shezi Paediatric ART Clinic at Chris Hani Baragwanath Hospital estimates that there are approximately 300, 000 children infected with HIV in South Africa.  About half of them are in urgent need of ARVs and many are still undiagnosed.  Apart from health benefits, anti retroviral treatment provides children like Luyanda with the opportunity to live fuller lives and to nurture their dreams and aspirations for success.

The Children’s Sector HIV AIDS National Network (CATCH) says without treatment, more than 40 % of children infected at infancy and will die before their first birthday.  UNICEF supports this Network and is working together with the Government of South Africa and civil society and community stakeholders to ensure that all children infected and affected by HIV and AIDS receive the care and treatment necessary to keep them alive.

UNICEF/South Africa/2009/Janitilal
© UNICEF/South Africa/2009/Jantilal
Luyando tells his story of hope and survival in the age of HIV and AIDS to a captive audience at the 4th National AIDS conference in Durban.

Get more people on ARV and on the road to recovery

Standing on the big stage in amplified conversation with the venerable archbishop, Luyanda is one of the lucky ones who have survived. “I am doing very well now,” he said.   The young man offered potent words of hope for other children living with HIV.  First, he wants to see many more people getting treated and taking ARVs to get them on the road to recovery.  He added, “Life is a gem; many things will challenge us, but many can bring us joy. HIV can never be an excuse for not being what you want to be in life.” 

With his big plans for his future firmly in mind – he regards himself as a leader, not a follower − Luyanda  is clear, composed and the ease with himself and the lessons he has learnt from his experiences.  Stemming from his love of history, he declared that his ambition is to become an archaeologist, confidently recounting the famous adage: “Without understanding our past we cannot understand our future.”

This year’s AIDS Conference, titled “Scaling up for Success” is the biggest to date, with 4,142 delegates from 52 countries registered.  The purpose of the conference is to examine the evidence, set the priorities and articulate next steps in the fight against HIV and AIDS.

The Children’s Sector offers these tips on how you can help

  • Be an advocate for children at conferences and other similar gatherings dealing with Aids.
  • Be a role model in your professional and personal life.
  • Find opportunities to support children within the work that you do.
  • Share information on the services available, and help children and families to access them.
  • Monitor the quality of services for children and provide constructive feedback to help improve services where necessary.
  • Identify the service gaps that exist in your community.
  • Ensure that your programmes and policies do not contribute to stigma and discrimination.
  • Get involved in your local Child Care Forums and provincial and local AIDS Councils and make sure that children’s issues are addressed at council meetings.
  • Share your experiences, challenges and successes to inform the work of organisations such as CATCH who are working in co-ordination action for children living with HIV and AIDS.

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