Dinah’s House

I went on a quest with my team to find Dinah’s house. Dinah’s oldest two children have not showed up in the HIV clinic for the last 2 months, and one of them was quite sick the last time we saw him. Our clinic outreach team had not been able to locate them and Dinah did not seem to have a working phone number, but my team had made some contacts in the neighborhood and thought we could find them.

Dinah cares for 11 children – 7 biological children and 4 orphaned nieces and nephews. We know that she is often overwhelmed with this burden, and my wonderful team and I could not help but worry about the family.

After some driving adventures over dirt non-roads and lots of asking for directions, we managed to find Dinah’s house, one room in a long row building made of mud with a tin roof.  In this one-room home, there is not room for all 12 of them to sleep on the floor of the single room, so some of them sleep at the neighbor’s.

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The needs at Dinah’s house are stark – she asks whether we could help with food, with shoes for the children so they will not be kicked out of school for having improper attire, and maybe for assistance in renting a second room.

Dinah’s nephews and nieces ended up with her after their parents died two years ago. The eldest, a 16-year-old girl, told a terrible story with tears in her eyes. After her parents died, she had tried to look after her siblings, but then members of the local community had burned down the house in which they lived because “they didn’t want the HIV in the house to spread.” The girl speaks sadly, wistfully, about the school uniforms that they lost in the fire. They have struggled to remain in school ever since.

The good news at Dinah’s house was that everyone was still alive, even the two who have HIV and have been quite sick. One of the boys continues to be quite sick, though, and I worried that he needed to start treatment for TB. All of the children are malnourished, and it is clear there is not enough food to go around. We arranged for transportation for them to come to the clinic for the x-rays and medicines that I want to make sure they have.  We can keep them alive with these medicines, though clearly this family needs much, much more.

Dinah’s house reminds me of where I am, of what it means to live in one of the world’s poorest places.  When you go to Dinah’s house, you cannot escape from what it means that ONE BILLION people still live in extreme poverty, surviving on less than $1.25 per day. At Dinah’s house, you cannot ignore what it looks like to live in a country with 1 million orphans, where it often seems like an entire generation of parents has been wiped out. You see Dinah and these 11 children fighting against all odds to keep everyone healthy and fed and in school, and it seems like they are too-often losing. It is ugly and sad and painful.

And yet.

Better to look. Better to let your heart break. Better to be aware.

When you are aware of what HIV still means for our world, you can become part of the larger, global community coming together around these families and helping them to carry on.  When your heart breaks, you draw close to the hearts of others. When you look, you know how to fight.

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December’s Top Five

Clearly, I have been a deficient blogger in December. So on this the last day of December and the last day of the year, I will do a quick recap of the top five highlights from December in the world of Doctor V.

ONE: World AIDS Day

We launched The Pocket Square Project initiative to provide support services for my Kenyan children living with HIV with the first-ever World AIDS Day INDY event at one of my favorite establishments in Indianapolis, The Libertine Liquor Bar. You can see all the photos here, but everything about the event felt like a fabulous birthday party to celebrate more years of life for my kids. We launched our website, debuted a video describing the project, and sold lots and lots of great pocket squares to a crowd interested in fashion, philanthropy, and global health.

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Photo credit: preppyguidetolife.com

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TWO: Youth Initiatives in Action

With support from The Pocket Square Project, we have been able to start offering support groups for HIV-infected youth at several of the clinics that never had these groups before. Even though I wasn’t present in Kenya, the kids and clinic staff kept me updated in real time with pictures and thankful emails about the group activities. These times for interaction and education with others who understand what they are going through offer the kids a lifeline for growing up positively with HIV.

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My favorite thing on WhatsApp – when my adolescents in Kenya send me photos of their events as they are taking place!

Even more fun was seeing some of our older youth living with HIV take leadership roles in organizing some of these activities. For World AIDS Day, our youth organized a soccer tournament for teams of 10-14 year-olds. They hosted a community outreach event with education on HIV and entertainment like dance troupe performances to facilitate HIV testing and awareness. They came together to run a youth activity day that featured educational sessions, a talent show, soccer match, and goat roast for over 100 HIV-infected kids. I love seeing these kids have the chance not only to grow up, but to shine. It makes my mama/doctor heart so proud.

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THREE: Italy

I had the privilege of spending my birthday week in one of my very favorite places in the world – Italy. Nothing could make my heart happier than wandering around Rome and Florence, soaking in the beauty of the cities, and eating, eating, eating. Such fun. This gorgeous place.

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FOUR: New Projects

New ideas are my favorite things and this month has been full of launch of new projects. The Pocket Square Project seems to have endless potential to grow. I love how my friends came together to launch this initiative to connect people around how fashion can unite local and global communities. I am also launching several other new projects. With my filmmaker collaborator, Thomas Lewis, we received a grant to create new films in Kenya that will focus on HIV-related stigma. We hope these films might generate empathy that breaks down the intense stigma and isolation surrounding those with HIV. I am also launching a research project that looks at children’s adherence to HIV medicines in Southern Africa, East Africa, and Asia (yes – LOTS of travel ahead!). Plus, we are closing out the final minutes of this year with a grant submission to explore how the HIV virus in children becomes resistant to our medicines and what we can do about this. Plenty of new adventures for work.

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FIVE: Embraced by Dear Ones

Throughout this month, I have been embraced and loved by friends and family in big and small ways. For this, I will be endlessly grateful. In the first holidays after divorce, I cannot tell you how much it means when people make an extra effort to get your new address, to reach out with calls, to send texts on days they know will be difficult, to let you know that you are not alone. I have been well and truly loved, and that will be a bright memory for this transitional December of 2014.

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Birthday dancing with my dear Elizabeth. With candy canes!

My darling nephews bring me nothing but joy with their love and dearness.

My darling nephews bring me nothing but joy with their love and dearness.

As an example, my dear cousin sent me this unexpected gift that makes me smile every time I look at it. These earrings were made by my cousin’s grandmother through marriage, a remarkable woman who she describes as “one of the nuttiest, naughtiest women I know.” She was once kicked out of the Kremlin! This woman, an artist, traveled the world by herself just because she wanted to. I loved this sweet and thoughtful gift filled with love and pointing to an exciting future ahead.

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And so we walk together into the close of December and the new adventure of 2015! My favorite Mary Oliver for this new year ahead:

I want to think again of dangerous and noble things.

I want to be light and frolicsome.

I want to be improbable beautiful and afraid of nothing,

as though I had wings.

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World AIDS Day: Faith

I am day late on my World AIDS Day posting for the best of reasons – we were too busy launching the first-ever #worldAIDSdayINDY event last night.

A great crowd came out to The Libertine to commemorate World AIDS Day and to help us launch The Pocket Square Project initiative. I am overflowing with gratitude for how communities here in Indy came together to connect around fashion and global health. More on that later, hopefully with photos!

I still need to tell a special story here, though, for World AIDS Day. (Even a day late.)

On every December 1, the day that we celebrate World AIDS Day, I remember a little girl named Faith.  I met Faith the very first time I went to Kenya, which was exactly 10 years ago.

December 1 was Faith’s birthday. I wish that Faith was alive today to turn 14. Faith’s birthday should be celebrated. There is a gap in my heart every World AIDS Day when I think of Faith. There is a gap where a girl should be celebrating her birthday.

Faith was the first child under my care who died from HIV. I took this photo of Faith and her mother on the day that I met them in Kenya on the wards of the hospital.

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Faith was 4-years old, and she only weighed 4 kilograms – about 9 pounds. I had never seen a 4-year-old child like Faith before that day, a 4-year-old who weighed less than some newborn babies.

Four-year-olds are not supposed to look like Faith looked. The HIV virus had stolen all of Faith’s energy as it destroyed her body’s immune system. The HIV virus was stealing away Faith. She was beautiful, but broken.

Faith’s mother had worked very, very hard to get her daughter to the referral hospital. You can see in the photo how happy and hopeful her mother looks. She is pleased she managed to get her daughter to this hospital.

Faith died two days after she was admitted to the hospital. Our medicines, our fluids, our nutritional support were all too little, too late. We could not save her. I could not save her. I remember her last breath. Faith taught me my first real lesson in how HIV steals children’s lives.

After Faith died, her mother kept thanking me for this photo that I had taken of Faith. She did not have any other pictures of her daughter, and she was grateful to have this one.

I felt terrible when she thanked me. I felt like I failed because I could not keep Faith alive. What was a photo in the face of the loss of a 4-year-old daughter?

I wished that I could change Faith’s story. I still wish that. I wish Faith was alive to turn 14 on this December 1, on this World AIDS Day. I wish we all could know Faith today. I wish we were celebrating Faith’s 14th birthday today in a different way.

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We have lost so many Faiths. 210,000 children died from HIV last year. 210,000 stories we will never know. 210,000 birthdays that will not be celebrated this year.

When I took care of Faith in 2004, I did not realize that my life’s work would become trying to change the stories of children living with HIV in the world’s poor places. I did not know I would one day be caring for over 15,000 Kenyan children just like Faith through the AMPATH program. I did not know that I would spend every day trying change the stories of children with HIV around the world into stories of health and hope.

3.4 million of the world’s children are living with HIV on this December 1, 2014. I love it that we gathered in Indianapolis for World AIDS Day to try to change the story for children like Faith. That is the entire goal of The Pocket Square Project.

I want more birthdays for more children.

We could have kept Faith alive if she had been able to enroll in one of our HIV clinics and start the medicines for HIV before she got so sick. We could have given her many more birthdays. On this December 1st, let’s keep committing ourselves to more and more birthdays for children like Faith.

 

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Gratitude #3: Stories for World AIDS Day

My daughter says thank you.

She is 19, but when I look at her, I see the nine-year-old. Like any mother does, I suppose.

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The nine-year-old had watched her father die. And then her mother. And then her sister. Her uncle and aunt had taken her in, but they could barely afford to feed their own four children, and they made it clear that they were not going to be able to look after her for long. The nine-year-old knew more of trauma and loss and death than any child should.

She tried to help with the cooking, with the cleaning, with taking care of the younger children. She woke up each morning wondering if this would be the day she would be turned out on her own. She empathized with the chickens wandering around the yard who didn’t know that today would be the day they became the family’s meal.

She woke up, one morning, to an unexpected change. A children’s home – a place that would take in orphaned children – had opened near her uncle and aunt’s little farm, and she had been given a spot at the children’s home.

A place at the children’s home meant unspeakable riches – three meals a day, her own bed, two outfits, a place in a foster family with 20 other children. Best of all, placement at the children’s home meant that she could go to school. The most glorious riches of all.

“I was thankful everyday,” she says.

There was a problem, though. She kept getting these terrible lung infections that made her miss precious days in class. She couldn’t stop coughing. She always seemed to have a fever. She was losing weight. She worried that she would lose her place at the home. She thought of her family and worried about a day when she might not wake up.

One day, I was visiting the children’s home, which was run by my Kenyan friends, and they told me her story. A pediatrician learns never to visit an orphanage without a stethoscope, even if it’s meant to be a social visit.  This pediatrician was worried.

At our clinic, my worries were confirmed. This 9-year-old had HIV. The children’s home had not wanted to accept any children who were infected, and so this was a turning point for them. Would they allow her to stay? Would they be able to manage the medicines and the clinic visits? They chose to meet this new challenge, and over the past ten years, they have shown themselves to be more than capable.

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And she has thrived. She scored very well on the national exams at the end of eighth grade, allowing her to get into an excellent secondary school – which made it possible for us to find a place for her at a school that would support her ongoing care. She thrived in high school, captaining the girls’ basketball team and doing well enough in her classes to earn a place in nursing school.

This December finds my 19-year-old completing her first semester in nursing school! She wants to become a nurse who can work with our clinics caring for HIV-infected children, helping other children to understand that they, too, can grow and thrive and have hope to the future. She complains to me about pharmacology and marvels over the intricacies of what she is learning in anatomy. She is a marvel.

I asked her what she would have said to me if she felt comfortable talking freely on that first day when I had diagnosed her with HIV – before I became her sponsor, before I became a foster mother of sorts. I thought it must have been the worst day for her, and I felt guilty in a way for being the one to tell her these terrible things.

“I would have said ‘thank you,’” she said. “You did not know that you were an answer to my prayers. I knew that something was wrong, and you knew that something was wrong too. You helped my parents at the children’s home understand that I needed treatment. I was thankful.”

“And I am thankful for this,” she says, pointing to her pile of science books from her nursing classes. “I am thankful that I am here.”

I am thankful, too. So thankful that she is here. For World AIDS Day, I invite you to help us support other HIV-infected children on their journey into adulthood. If you are in Indianapolis, we have the perfect opportunity — #worldAIDSdayINDY. Join us please.

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Gratitude #2: Stories for World AIDS Day

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“I have heard this story too many times,” I think, as I listen to the grandmother in front of me.

Rotich is 3 years old. His father died just months after he was born. His mother spent most of his first two years of life in and out of the hospital. No one knew exactly what was wrong with her, but when she died a year ago, they told Rotich’s grandmother that it was HIV. No more father, no more mother.

Rotich went to live with his grandmother after his mother died. She barely scrapes together enough for the two of them to eat one meal a day, but she loves this little boy and so she keeps trying. She asks her neighbors for help, and she does her best to provide for him.

A few months ago, Rotich got sick with a bad, bad cough. He kept coughing and coughing. Not only was he struggling to breathe, but he was too weak to eat even that one meal a day. Finally, his grandmother got him to the hospital. At the hospital, they learned that Rotich has this HIV virus in his blood too.

Those were the bad times. Rotich’s grandmother thought she would lose this little boy as well.

“He was all that remained of my daughter,” she said. “And I did not want to lose him. But all I knew was that those who have HIV — they just die.”

Thankfully, Rotich’s grandmother was wrong. She kept trying to fight the virus, despite her fears. She managed to get him enrolled in one of our AMPATH clinics in a town within an hour’s trip of where they live. At the AMPATH clinic, Rotich was started on a combination of medicines that could fight back against this virus in his blood.

With these medicines, Rotich’s story transforms from death to life.

My study team started evaluating Rotich and his grandmother every month, going to their house and seeing them in clinic. During these evaluations, they make sure that he gets all four of his medicines, twice a day, every day. They helped arrange for him and his grandmother to get a small monthly supplement of food to help them get a second meal each day.

And then we all got to bear witness to a miracle. This last remaining member of his family began to thrive and grow.

I have heard this story many times, for many many children. From death to life. And even though it is a story heard over and over, it is not really too many times. It’s the best kind of repeat. You can’t grow tired of the repeat miracle.

35 million people are living with HIV today, but only 14 million of them are able to access the treatment that transforms their story from death to life. For children, the gap is even worse — only a quarter of them are able to get the medicines they need for this miracle. For World AIDS Day, let’s raise our voices together to close that gap.

With our friends in The Pocket Square Project, we want to support Rotich and children like him on their journey all the way to adulthood. Join us in Indianapolis:

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