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Sunday, August 07, 2016

Kenya: Health is like the sun

Disease and disasters come and go like rain, but health is like the sun that illuminates the entire village. Kenyan proverb

I’m back in Africa where, contrary to popular belief, it is not scorching hot but cool and pleasant, lush and green. It’s winter here, and the mornings are moist and overcast, later clearing to blue skies and mild temperatures. I’m in Kenya, in particular, visiting the children and young men who participate in Save One Life, our child sponsorship program. We work through our in-country program partner, The Jose Memorial Haemophilia Society, established ten years ago by Maureen Miruka, mother of a child with hemophilia. They’ve been fantastic to work with and this is my fourth or fifth visit to Kenya, a country I’ve come to love. Over just two days we will visit six families around the capital, Nairobi, and in Murang’a, a town about 90 minutes away from Nairobi.

Our volunteer US team arrived with multiple heavy bags, packed with gifts for the families (t-shirts, caps, toys, candy, school supplies) and our hiking gear, for following this trip we will climb Mt. Kilimanjaro as a fundraiser for Save One Life. In fact, as this is posted automatically on Sunday, I have already started my climb by now!

After our first Kilimanjaro climb in 2011, we raised $65,000 for Save One Life, for our Africa programs. Many people in our US and global community asked if there would be another climb. Particularly, some executives from industry wanted to climb, so we arranged a “CEO Challenge,” for those captains of industry to not only climb, not only raise money for Save One Life, but to experience a world vastly different from their own firsthand, at ground zero. To experience, even for a day or two, the lives of the poor with hemophilia in a developing country.

Save One Life's volunteer team with JMHS at
Stanley's home
Our volunteers from the US are Eric Hill, vice president and COO of Diplomat Specialty Infusion Group, formerly vice president of BioRx, and his 15-year-old son Andrew. Eric serves on our board of directors as treasurer and has been invaluable for his expertise and dedication. He sponsors 31 children! Eric climbed with me in 2011 with his son Alex. Eric and I know exactly what kind of suffering we are in for! We also have Rich Gaton, co-founder and president of BDI Pharma, a specialty distributor that provide hemophilia and other therapies since 1995. Rich’s company is a proud member of Save One Life’s Dedication Circle, sponsoring 20 beneficiaries over the past eight years. With Rich are his wife Wendy and two daughters, Taylor (20) and Samantha (16).
Sarah Mumbi of the JMHS

Also with us are Mike Adelman, vice president of commercial operations for Aptevo Therapeutics, Inc., a new company spun out of Emergent BioSolutions, manufacturers of the recombinant factor IX product Ixinity. Joining us on the Kili climb is Jim Palmer, MD, a surgeon from Philadelphia and friend of Mike’s, who is also fundraising for us!

Our day Thursday started off with a hotel pickup by Maureen Miruka, our long-time colleague, founder and president of the Jose Memorial Haemophilia Society, dedicated in memory of a son she lost to hemophilia. The JMHS is our program partner in Kenya, and through it we sponsor 47 children and adults with hemophilia, with two more registered and waiting to be sponsored. With her were Sarah, the office administrator, a quiet and lovely recent college graduate, with beautiful eyes and cascading braids. Maureen whispered to me, “Sarah is a godsend. She is efficient, responsive and intelligent. I want to keep her on!” And the charming, energetic and gregarious Kehio Chege, father of a child with hemophilia, and board member of the JMHS.

Maureen Miruka, president of JMHS,
Jane Mugacha, pediatric nurse and Sarah Mumbi of JMHS
We loaded up the two safari style vans with gift bags, our cameras and water, greeted our “pilots” (drivers) with a quick jambo (hello), hopped in and drove off. Navigating the Nairobi traffic, we had time to chat about our mission and hemophilia in Kenya. Maureen provided background on herself to the group, how she founded her society, and plans for the future.

At this time, Kenya does not provide factor for its estimated 3,000 patients. Treatment is centralized at the Kenyatta Hospital, the large public hospital in Nairobi. Project SHARE, operating from my company, LA Kelley Communications, has provided factor for Kenya over the past 15 years, as has the World Federation of Hemophilia. We continue to provide factor to both the JMHS and the Kenyatta National Hospital. Of the estimated 3,000 with hemophilia in this country of 44,000, only about 500 have been registered. Of the 500, only about 150 are “regulars,” that is, we know who they are and where they live. The others are what I call transient patients: they may have visited the hospital once in their lifetimes, or have visited a few times, but not regularly. In developing countries, people move about frequently, sometimes living with relatives in different towns, villages or addresses in the cities, as they struggle to make ends meet.

And most of the hemophilia patients here are poor. These are the ones enrolled in Save One Life, a few of which we would visit today.

We zoomed past roadside markets, bursting with fresh fruits like papaya, watermelon and bananas, managed by women in colorful clothing. City fell away to countryside in no time. The tall buildings and billboards of Nairobi transformed into banana trees, tea plantations and rolling hills. Kenya is beautiful, like so much of Africa. The climate and topography, the images and animals all have captured the attention, dreams and affections of visitors.

Our first stop after a 90-minute jaunt was the Murang’a District Hospital, to meet with the hospital chief, tour the wards and offer a gift of factor. Jane Mugacha, nurse and our main contact there, showed us the pediatrics ward (“My home,” she said, holding her hand to her heart), where a small refrigerator held a few vials of factor. “This is where the patients come to get infused locally,” she shared. Murang’a is 90 minutes from Nairobi and so it is far better to store factor here. This sounds logical, but trust me, in developing countries most hospitals have no factor except the main government ones in the capitals. Patients have to travel hours, sometimes days, to get treatment for bleeds that by then have already done their damage.

Wendy Gaton with Stanley
I’m sure Rich and Eric were shocked at how little factor was stored, when back home, their inventories were chock full for the insatiable American hemophilia market. We donated about 30,000 units, more than tripling her current stores. Jane was ecstatic, effusive in her praise, for just this small amount!

I pointed out to Wendy and her daughters the “waiting room,” of the hospital: wooden benches outside under a steel-corrugated roof, overlooking an unpaved, red dirt parking lot. And people wait and wait; the hospital is always busy, always crowded.

Stanley's farm
We chatted outside, then said kwaheri, and left to see patients. About 15 minutes away we arrived at Stanley’s home. I last visited Stanley in 2011, and he was in a new packed-mud home now, on his mother’s property. Stanley has hemophilia, is rail thin, and rather somber at first. (This would all change after an afternoon spent with Kehio and our guys.) We hiked down a dirt path bordered with sprouting vegetation, leaving the drivers and our safari jeeps on the road. Everything is red—the dirt, the mud structures— and green—the tall grass, the banana plants, the papaya trees. Beyond the rusty colored home were home-made wooden pens for farm animals: two mud-covered cows for milk, a few goats, and some chickens. Stanley looked good since the last time I had seen him, walking, even though his gait is a bit hobbled. This was my third visit to his home. Since that time a new child had been born, a boy, who was now almost five. He stared at our group with wide eyes.

Stanley
Stanley is too old to be sponsored (and looks even older than his years), but he was the recipient of a micro-enterprise grant. Stanley shared how farming took a huge toll on his joints and caused bleeds. He had to hoe, hack, pick and carry crops to be sold at the markets. It’s backbreaking work for someone with hemophilia. Save One Life had given him a grant to start a shoe vendor business, selling shoes at the market instead. It didn't work out as he had hoped, and with the money left he instead bought a cow. He now sells milk daily to a local school. He earns only about $50 a month. We visited the cows in their pen, and Maureen, who has a PhD in Agricultural Research and Development and also is Director of Agriculture and Markets for CARE USA, questioned Stanley on the condition of the cows. Their hip bones and ribs jutted from their paper-thin skin. Dried mud dotted the flanks of one cow, and her hooves stood deep in feces. Behind her, bordering the woods, a mountain of manure. All very unsanitary.

Our main question that day: what do you need? Stanley didn’t hesitate: concrete, to build a safe and slanted platform for the cow to stand, to separate her from the manure, and to make it easy to wash off the manure and mud. Rich Gaton, ever the man of action, asked how much and when? I love it! We could make an immediate and concrete difference, no pun intended, in Stanley’s life today. It’s what Save One Life is all about.

Maureen and Stanley chatted about the logistics, and Maureen promised to get back to us with an estimate for building a concrete platform. Samantha and Taylor, cow lovers like me, wanted vitamins as well for the cows. At the very least, a vet should look in on them.

Derrick
Our next visit was to see Derrick Chege, and Stanley accompanied us. When Eric, Maureen and I last saw Derrick, he was two, and had an enormous, disfiguring hematoma on his forehead. We thought it was only a hematoma, but Maureen told us this day we were wrong; it was a psuedotumor. Pseudotumors are not seen in the US for hemophilia. They are pulpy masses of blood created from repeated, untreated bleeds into one area. Blood vessels grow and entwine within this mass, making it almost impossible to operate on without clotting factor. The patient could easily die. Derrick was lucky; there was clotting factor available, and surgeons at Murang’a removed the offending mass. Today, he wasn’t home at first, but his grandmother, Virginia greeted us like we were family, and long lost relatives at that. I was late joining the group as I ran back to get our bags of goodies from the car. When I arrived, tripping down the dusty path and onto her farm, she saw me, recognized me and despite her advanced years, crouched down like a tiger, arms sprung open and flew at me. We embraced and squeezed each other tight. Then she immediately launched into a lecture about my weight: why was I so skinny? “Like you!” I replied. She grabbed me tighter and we laughed. Wow, she is strong!

Our group looked about her small, contained farm, noting the healthy looking cow, goats and chickens, so different than Stanley’s. We shared our gifts with the children there, including Tootsie Pops and balloons. You cannot imagine the joy a simple balloon brings to children who literally have no toys, not even a crayon. The bright blue and red balloons contrasted with the earthy colors of the little farm and homestead. The children chased the balloons and it gave our group a great way to interact with them. All shyness vanishes when there is a balloon to toss around. I gave Paris, Derrick’s five-year-old cousin, a teddy bear from my mother, and she instinctively and promptly tied it to her back in the fashion of African women who carry their babies on their backs.
Virginia and Susanne

We ducked and went inside Virginia’s home. Virginia chattered with animation in her delight to see us. She really is a funny woman. She looked at Rich and Wendy’s two beautiful daughters with a critical eye, and wanted to know immediately if they were married. They are only 16 and 20! When she learned they were not, she said in Swahili, “You will find a husband here!” and we all laughed.

Then she turned to Eric, and demanded, “Where is your wife?” No boundaries with Virginia!

Her granddaughter, also named Virginia, is a beautiful Kenyan woman, quiet and demur, holding one-year-old Susanne on her hip. Derrick then returned home from school, and shyly greeted us. For life on his simple farm, seeing all these muzungus (white people) was a surprise!

Derrick had grown tall. And the only remembrance of his disfiguring pseudotumor was a small, orange scar on his forehead. His joints were in good shape and he was happy. We shared more toys with him, learned about school, and played outside a bit with him. All the while we assessed the condition of the home, farm animals, children, and school situation. Maureen was concerned about the apparent ring worm on Derrick’s head.

With many hugs and promises to return, we walked back up to the dirt road, and to the safari jeeps. But Virginia’s mother wanted to say a prayer for a safe journey, especially up Kilimanjaro. We all bowed her head as she prayed in Swahili for our safety. Then the children besieged us for more candy and balloons. I will always remember to travel with balloons from now on. I forget how easy they are to transport, and how much children enjoy them.
 
Laurie Kelley and Peter
On to the next home: Peter Muchoki. This was not far down the road, and a new place for Peter, who moved into his uncle’s mud home with his mother Jane and brother Zakayo. His story is poignant: impoverished, no father, both brothers have hemophilia, and Zakayo suffers from what sounds like bipolar disorder. The last time we were here, Maureen and I visited Zakayo in Mathare, the psychiatric hospital in Nairobi. What a sad visit that was; the wards are bare of anything warm or home-like. By 8 pm, all the young men are drugged to be quiet and left to sleep on army cots with only a thin blanket. Zakayo was left there because Jane couldn't afford to pay his bill. Without payment, patients are kept until it is paid, sometimes months. In the meantime, the bill grows… it’s a vicious circle. We paid it and got him home that night.

Pulling over on the dirt embankment, we disembarked and saw Peter, tall and thin, not changed much since 5 years ago. He has the sweetest face and disposition. We shuffled down a short hill to his uncle’s home, where they all lived. Like most patients, they have a mud-packed home, dirt floors, no windows, no inner lights, and a steel-corrugated roof. We crammed in and chatted with the handsome, soft-spoken young man. Yes, he had finished school, thanks to a scholarship from Save One Life. He is waiting now for his grades, and will receive a certificate in electrical engineering. His goal is to secure an “attachment” (internship) with a company and maybe get hired. Then, if all goes well, open his own repair shop. These are practical and doable goals and we were pleased to know he had a plan. His health has been good, though he did miss time from school due to bleeds. He explained to our group how painful the bleeds can be. “I did not sleep for two nights due to the pain,” Peter recalled. “It was during exam time and so it was difficult to focus on school.” As he spoke I could see sympathy register on Wendy’s face, and those of her daughters.

We shared with Peter that we had some factor just for him. We could store it at Murang’a Hospital and he could go there to get it. He wondered if we could possibly get him a fridge, to store the factor at home. Eventually he will learn to self-infuse. At first we declined; it’s not his home and maybe they would be asked to leave? Perhaps the uncle wouldn’t allow the fridge to go with them?

Rich was clearly frustrated with this answer and wanted to do something now. I love that attitude! We discussed the fridge with Maureen and Kehio, and they agreed at last. I turned to the guys—Mike, Rich and Eric—and asked if they could change Peter’s life for the better right now? Not a problem. Out came $200 and we gave it to Sarah. She would return in a few days with the money, and shop with the family at the market, to ensure the money is used for a fridge.

Mission accomplished! Peter is doing well, will now have factor in his home, an incredibly rare thing in Kenya. He’s our hope for the future.

 

No sooner were we in the safari jeeps, then Zakayo appeared, on crutches. He looked preoccupied, as if in pain. I hopped out of the jeep, gave him a hug, and asked if he remembered me. He did. Jane started pulling up his pants leg to show me his wound, a deep gash in the shin, bleeding through the bandages. Zakayo wanted money, to start a stand to sell items, possibly fruit, but due to his condition, we didn’t think this was a good idea. We’d rather support the mother or Peter, who in turn would support him. He seemed crushed with this answer, and backed away. I wish we could help each child, but sometimes we cannot.

Still, it was a productive day with many memories. To each family we pooled our money and gave a cash donation equal to about half of all their monthly income, just to ease their burdens, which are many. And each in turn gave us a gift: a huge stalk of bananas, or a bag of maize, a hug. But the best gift of all was their permission, to allow us to help them, to allow us to share their world, so different than our own.

Hopefully, we will share our futures with them through this journey called life.

More stories next week, after our Kilimanjaro climb!

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