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.

 

Posted at 14:29

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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Posted at 14:48

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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Posted at 05:16

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.

Posted at 16:40

Bright and Shining

Here is a thing of beauty:

Ethan is 18, and he has been living with HIV since he was born. For the first years of his life, he was sickly and small. Every day, in the silence of her heart, his mother wept for him. She was sure that her son would not live.

She wanted the world for him. Silently, she begged God to save him, to spare him, to let him grow up and know love and happiness and find his way. After years of watching her son get sick over and over again, there came a day when she was given a new test result. The doctors had tested Ethan for HIV and they found that he was positive. This meant that Ethan's mother was positive too. She carried in her blood this virus that threatened to kill them both.

This was the worst day -- and the best day. Because finally getting that diagnosis meant that the doctors knew what to do for Ethan at last. He was started on the HIV medicines that could restore his body's protective immune cells and prevent him from getting sick again and again. Ethan began to grow. He became his mother's strong and laughing boy. Slowly, she began to have hope again.

Ethan has done extremely well on his HIV medicines. He graduated from high school this year, and he was the star of his school's soccer team. He loves soccer, but even more, he loves the youth of his community. His passion is to help other kids who are growing up with HIV to know that HIV is only part of the story of who they are -- that they can still growth and thrive and dream.

"I will always do all I can to support those in need of care and support," he says.

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Ethan has organized a youth soccer tournament for kids ages 10-14 who are also growing up with HIV. He has 10 teams organized for the tournament, and the big competition is planned for December 1 -- World AIDS Day.  On this World AIDS Day, these children will be laughing and shouting and playing their absolute best on the soccer field. These children will be a bright and shining example of what it can look like to live with HIV when you have access to the medicines you need. They are the lucky ones; 2/3 of the world's HIV-infected children do NOT have access to HIV medicines. Most of those children will not be playing soccer. They will be too busy dying.

Today, these kids here in Kenya became lucky ones in another way too. Thanks to a gift from Adidas organized by our partners at The Pocket Square Project, we were given a bunch of wonderful soccer balls. Every single team will have a BRAND NEW soccer ball to play with. I cannot tell you how excited they will be -- and how delighted Ethan was at the prospect of having this kind of support for his tournament. Remember, my kids play soccer barefoot in the dirt. They make balls out of plastic bags knotted together. A real ball -- let alone a beautiful new Adidas ball -- is a marvel they will cherish.

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Their doctor was really excited too. It is a joy to see my remarkable youth leaders supported and encouraged in this kind of tangible way. HIV medicines give these children life and hope, but this kind of gift brings them the encouragement that friends around the world are cheering for them too. Thank you.

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Posted at 07:17

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