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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Gratitude #1: Stories for World AIDS Day

As we lead up to World AIDS Day on December 1, I always like to share the stories of our patients in Kenya. For the 32 million people living with HIV right now today and for those of us working to fight back this virus, every day is World AIDS Day. It is my privilege to be immersed in these stories of AIDS.

During this week where we practice gratitude and celebrate thankfulness, I am going to remember some stories of thankfulness. Stories of thankfulness as we prepare to commemorate the upcoming World AIDS Day, stories of thankfulness even in the face of this terrible epidemic.

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Marian sits quietly in the chair in our clinic room, her arms wrapped around her sleeping one-year-old daughter. One-year-old Ellen breathes heavily, but only with the deep in-and-out of sleep. Her lungs sound clear and healthy when I listen with my stethoscope.

Six months ago, baby Ellen had a pneumonia that landed her in the hospital. She struggled to breathe, and the infection in her lungs almost ended her short life. Under my stethoscope, her breathing was coarse and crackly, her lungs filled with fluid and infection.

Marian had given birth to Ellen at home, and she had never been to a hospital before in her life. But worry over her coughing, gasping baby pushed Marian to bring her to the hospital facility where she thought her sick baby could get the treatment she needed. Bringing Ellen to the hospital saved the baby’s life; she needed medicines that could only be given there. And it turned out she needed the hospital for other reasons as well.

While Ellen was in the hospital, the doctors tested her for HIV. Positive. When a baby tests positive for the HIV virus, it almost always means that the baby’s mother is infected too.

On that day six months ago, Marian held her sick baby in her arms as she sat in a single bed on the hospital wards and she heard that both she and baby Ellen were HIV positive. Marian carried in her blood the virus that would end both of their lives. At least, that’s what she thought.

“I thought that HIV means death,” Marian said. “I knew we both would die.”

Thankfully, Marian was wrong. Her efforts to get Ellen to the hospital meant that the baby could have the antibiotics and oxygen she needed to treat her pneumonia. And although many HIV-infected babies do die when they are not tested and when they do not get treatment, we knew now that Ellen needed this treatment. We could offer baby Ellen treatment – and Marian too. Mother and her baby were quickly enrolled in one of our AMPATH clinics, and both were started on medicines to treat their HIV.

Ellen recovered well from her pneumonia. She has been growing quickly and the medicines have helped her to progress through all of the baby milestones we would hope for – sitting, crawling, standing, starting to walk. No more rashes, no more pneumonias, no more skinny and not-growing baby.

“Look at her,” says Marian proudly. “You would never know.”

Marian is feeling better too. Her childbirth had left her with anemia, and she had lost far too much weight. With the medicines, she says her strength and weight have returned.

“I am thankful,” Marian says. “I am thankful we have known the sickness is there and come to treatment. Otherwise, we would have been lost.”

I am thankful too.

This is a devastating story, but this is also a story of thankfulness.

Marian was thankful that the virus in her blood and in her daughter’s was discovered. Thankful that she could be linked into HIV care. Thankful that they could be started on the medicines that transform HIV from something that means certain death into an illness with which one can still live. Thankful that she can hold in her arms a healthy, growing, sleeping baby.

Come and be thankful with us. We are celebrating the first ever #worldAIDSdayINDY on December 1 at The Libertine in Indianapolis. It’s going to be a fun mix of fashion and philanthropy, with the launch of The Pocket Square Project and all proceeds to benefit services for our HIV-infected kids in Kenya. We would love to have you there!

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Let Your Heart Break

I have been excessively swamped in Doctor V Land by transitions big and small. In the midst of much that seems overwhelming, I know more than ever that I need compassion to walk through each day with hope for the adventure that is tomorrow. And I know in a new way how each person I encounter needs that compassion too.

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I came across these words from Melinda Gates about how to show compassion, and I loved them. I share my stories from around the world, and I know that I am doing exactly what I am meant to be doing in the midst of this unjust, difficult world. And I struggle with how to introduce others to what it means to have compassion and hope and purpose when you confront poverty and pain beyond comprehension. Here’s one powerful suggestion:

The world is full of what seem like intractable problems. Often we let that paralyze us. Instead, let it spur you to action. There are some people in the world that we can’t help, but there are so many more that we can. So when you see a mother and children suffering in another part of the world, don’t look away. Look right at them. Let them break your heart, then let your empathy and your talents help you make a difference in the lives of others. Whether you volunteer every week or just a few times a year, your time and unique skills are invaluable. – Melinda Gates

Don’t look away. Let your heart break.

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