When hope is not enough

His smile was broad and strong, but his voice was audibly weak. That, coupled with his frail body and slow measured gait, signaled to me that he might not be doing well. It was Wednesday morning, and Nkosinathi and his grandmother had come to Sinikithemba to see the doctor. Before joining the long morning queue, the two of them sat down to chat with me, and I had the chance to get briefly acquainted with this lovely 13 year old boy, who is new to the Gift of Hope program this year. My first impression was that he had the physical stature of a child far younger, but as soon as I began to talk to him he showed the intelligence and maturity of a young teenager.

I asked him to spell and pronounce his rather long and difficult Zulu name for me, and without hesitation he rattled it off in perfect English, although his voice was soft and he had to stop once to catch his breath. As we started to chat, a sad narrative of his life began to unravel, one which I have heard many times in my visits to South Africa. It is the narrative of so many children here who are AIDS orphans, many of whom acquired the virus at birth through mother to child transmission. Such is the story of Nkosinathi (aka Nathi)

In 2005, when Nathi was just a young boy, his mother died from AIDS. He doesn’t know his father, and so like many other South African children in similar circumstances, Nathi has been raised by his maternal grandmother, or gogo in Zulu—the backbone of so many South African families left devastated by the epidemic. Together, with his two sisters (age 5 and 16), an aunt, uncle and his gogo, they share a small house in Umlazi, the second largest township in South Africa, following Soweto. The townships are overburdened by unemployment, extreme poverty and AIDS, and many who live there go without any HIV treatment and simply die. Getting care at Sinikithemba is beyond the means and the mind set of many who live here, as they often struggle to simply put food on their table. For Nathi and his family of 6, they depend on a small income earned by the aunt, and the granny's pension and child care grant. It is difficult, but somehow they get by. "I am trying to manage, but it is hard", says gogo. "It is not enough. I am even thinking of making big cookies to sell to get extra cash.”

With the help of a translator, the granny explains how very grateful she is for the support she has been receiving through the Gift of Hope. “When I heard that I would have this sponsorship I was so happy…I can’t even begin to describe it because it has been so difficult for me. I need 100 rand just for bus fare and to buy Nathi something to eat on the way. And I have no more money to pay for the clinic. So the day I was told I no longer had to pay I was so happy. I really believe that if it wasn’t for the sponsor that maybe Nathi would have been gone by now.”

Nathi is in grade 6 in school and more than anything else he loves to draw! His gogo tells me that wherever he is, she always finds him drawing. He wants to be an artist when he grows up, and gogo hopes he can one day find a school which puts more emphasis on artistic training so that he can develop his skills further and realize his dreams. It is clear from the verbal and visual communication between this child and his grandmother, as they share their story, that they also share a warm and loving relationship. “I love my granny because she takes such good care of me”, Nathi tells me. She smiles with pride as she tells me what a good boy he is, and how he loves to help out at home by cooking meals for the family. He enjoys making his entire family a breakfast of fried eggs, fish fingers and Vienna sausages. I joke with him by saying, “yum…That sounds delicious. Can I come to your house one day and have breakfast with you one day?” The gogo smiles broadly, revealing the gap between her teeth, and says “yes, you will come when he feels better.”

With this prompt, I learn more about Nathi's current health. He has not been well in recent months, and was recently admitted for a two week stay at McCord, where he was treated for problems with his lungs. It seems it was not TB, but rather some sort of lung infection. Thankfully, the cost of his stay was covered by an American organization known as Loving South Africa. They have established a fund at McCord to cover hospitalizations for HIV infected children who are not able to afford the hospital fees. Nathi and his gogo are are so grateful for this assistance. " I could not believe it when I saw the hospital bill and found out that someone else was paying for it. I was so happy."

Although Nathi is feeling somewhat better since being discharged, I can still hear a wheezing sound as he talks and he occasionally strains to catch his breath. We head out into the sunshine to capture some photos and Nathi leans on the arm of his granny as he slowly makes his way up two small steps. He walks with the gait of a frail elderly man, not a healthy 13 year old, and I feel an uneasy concern rising inside of me regarding this child's overall health.

But this concern is temporarily overshadowed by the sheer joy on his face when I give him a small box, covered in red wrapping paper, and a card and photo sent over by his American sponsor, Maria.. Nathi slowly and carefully peels back the paper, his face full with anticipation at what surprise awaits him. He reads the lovely message and studies the photo sent by Maria, then passes it to his gogo, who is so thrilled to see the picture of the woman who has given her and her grandson so much help and so much hope. Nathi opens the box, and the moment he sees the new wrist watch inside, he bursts into a grin which spreads from ear to ear!! “I feel so happy” he exclaims, as his granny throws back her head in laughter and delight! For that one moment nothing else in the world matters to this child or his grandmother. It is truly a moment to cherish, and one I that I will hang onto and remember.

But tragically, and ironically, it was perhaps the last real moment of joy that Nathi ever knew. After we talked on Wednesday Nathi was seen by the doctor at Sinikithemba, who sent him to the outpatient department of the hospital. As I was making my way to one of the clinics later that afternoon, I saw him sitting in a wheel chair, his granny beside him holding his hand. I ran over and inquired how he was feeling and if here being re-admitted to the hospital. The granny sighed with relief and said no, he had been treated and they were going home. I thought that everything was ok...

This morning, after returning from a long weekend, I made my way up to Sinikithemba to meet more children and caregivers. The counselors were all gathered in the office, talking in hushed voices, and each wearing an expression of deep sadness---a part of this familiar landscape they have all come to know too well. "We lost a child over the weekend....it was Nathi." I can hardly believe what I am hearing; that the delightful child I had just met for the first time on Wednesday morning, was now gone. After returning on Thursday and being admitted, Nathi lost his battle and passed away at McCord on Friday morning.

This delightful 13 year old boy will not make any more delicious breakfasts for his 2 sisters he leaves behind, and the gogo who has taken such good care of him. He will not celebrate his 14^th birthday in January, or grow up to be an artist, or measure time by the beautiful new watch he was given by his generous, caring sponsor. Instead, he is now another tragic victim of this terrible epidemic, which is tearing apart families and communities and leaving so much sadness in its wake.

Nathi's story does not have the same happy and hopeful ending that most of the sponsored children enjoy. He and his granny were blessed with the gift of hope, but sometimes that is simply not enough. This serves as an important reminder to all of us that we must stay vigilant in our fight against HIV/AIDS. The best we can do now is to honor his life and treat his loss as a call to action--a call to stay engaged and remain in the fight for the long haul,however long that takes. We must continue to do whatever we can to bring hope to children and their families infected and affected by HIV. They are depending on us and we cannot let them down.