Speak Out, Create Change!

Kenyatta National Hospital

It’s
about time. Time to speak out and speak up about hemophilia: our community, our
accomplishments, our needs. Speak Out, Create Change was the slogan for World Hemophilia Day, the
April 17 event that commemorates the birthday of World Federation of Hemophilia founder Frank Schnabel, an American who envisioned our global community working
together to improve care.

As
World Hemophilia Day was celebrated in many countries, I chose to spend this
year’s WHD in Kenya, a country I have been visiting since 1999. The nonprofit I
founded, Save One Life, has three programs here—microgrants, scholarships and
sponsorships—each touching directly the lives of many children and young men
with hemophilia.
The
day was organized by the eloquent Dr. Kibet Shikuku, a hematologist at the
Kenyatta National Hospital in Nairobi, and James Kago, a young man with hemophilia. Dr. Kibet welcomed about 70 family
members—parents and children with hemophilia or von Willebrand disease. The day
provided an overview of hemophilia for the press members present, the needs of
Kenya, and words of wisdom for moving forward from this day.
Dr. Kibet lectures about hemophilia in Kenya

“My
prayer today,” Dr. Kibet invoked,  “is
that we walk forward as a group, so we can advance the issues that affect us.
We are one body with different endowed parts. We want to be worthy partners for
better hemophilia care in Kenya.”

One
main goal is to ensure better diagnosis, he added. With a population of 43
million, Kenya should have roughly 3,000- 4,000 with hemophilia. About 400
patients were identified at one point (meaning they came in at one time in
their lives for treatment), but the numbers are not reliable. Only about 50
patients are regular visitors to the treatment center.
Anastasia, lab technician

Other
take aways from Dr. Kibet:

We
Kenyans we have every right to be provided for by things that affect us with
hemophilia.
We
must take charge of our own destiny.
Togetherness
will make us strong.
Speak
with one voice!
We
must lobby the government to support testing and availability of factor.
Speak out… for kids like Emmanuel

Kibet
thanked the WFH and Project SHARE for their support of donated factor. He also
thanked donors in US, especially those who support Eldoret project, like the
Indiana hemophilia treatment center and Novo Nordisk Haemophilia Foundation.

He
also thanked the Jose Memorial Haemophilia Society and showed a photo of a man
who was in bed for four days with a severe bleed. The JMHS provided him with a donation
of factor.
He
noted that there is simply not enough factor; once Kenya secures enough
regularly, then it can offer home therapy.
Emmanuel

This
is a huge point. Kenya is large, and roads can be difficult. Most patients
living in rural villages have no way to get to the treatment center in Nairobi,
the capital, or can afford transportation. I know first-hand as I have
traversed these roads quite a few times. Imagine taking a public bus, crowded,
hot, hours long, with a painful psoas bleed or worse.

James Kago

The audience really responded to this idea and asked about
home therapy… hoping that someday, someday speaking out… will create change.

Kenya has come a long way, and I was very excited to see at
this meeting more change is afoot, all for the best, to create the kind of
unity and one voice Dr. Kibet mentioned.
The informative meeting was concluded and a delicious lunch
served outside on the hospital grounds. I was able to hang out with a few of
the boys I’ve known for years and years: Jovan, Peter, Charles (who has a baby
now!), Emmanuel, John. With all these friendly faces, it was like coming home.
Lucy Kago asks a question
Asante sana everyone!!

Mrs. Mwangi and Stephen
Moline Odwar and Laurie Kelley
Maureen Miruka of JMHS
john with Laurie Kelley
Simon, Laurie Kelley, Peter

Laurie Kelley with Lucy and son Simon
Peter, Maureen Miruka, Jovan Odwar

Kenya’s Maasai: Do They Have Hemophilia?





I’ve been back almost two weeks now from my African adventure, and the Kilimanjaro climb, and my toes are still healing! One of the great privileges I find when I travel to Africa is the chance to meet and chat with the Maasai. The Maasai are an ethnic group of semi-nomadic people who live in Kenya and northern Tanzania. They are among the best known of African ethnic groups (which even the Kenyans call tribes). You can’t miss them with their beautiful red cloth (indeed, “Maasai” means red), elaborate beads, braids, spears and daggers. They tend to be tall, reed-thin and love to jump super high in ceremonial dances. They live out in the savanna, in circular villages (which you can see from an airplane!) called bomas. Their culture is based on cattle: cattle is their currency, their food, their livelihood, their everything. They speak Maa, and many can also speak Kiswahili and English. There are about 840,000 Maasai in Kenya. Quite a few visited the Keekorok Lodge, where we stayed for three days after our rigorous climb.

Indeed, as soon as I stepped off the bus that brought us to the Lodge after a quick 5-minute ride from the dirt airstrip, I saw a Maasai waiting at the front lobby to greet us. It was Daniel! I met him last year during my visit. We had a wonderful chat while he was welcoming the other guests. We also caught up later that evening, after the Maasai came to the Lodge in full force and sang, or rather chanted and whooped, around the dinner table! The Lodge pays them to come and entertain the guests. They sing, do their walking/chanting, and then go outside to do the leaping that really is their trademark. They all try to outdo one another with their leaping. I learned that whoever jumps the highest attracts the most girls!

They can look very ferocious, and indeed, one of their rites of passage is to kill a lion. Around age 18 or so they are expected to become warriors, and to do this they must have several things done. One is to kill a lion with a spear. When I mentioned to Daniel and Lepapa, another Maasai I met last year, that we are taught to fear lions, they both looked at each other and smiled knowingly. “There’s nothing to fear from a lion,” Lepapa said. “Now Cape Buffalo, that’s an animal we fear.”

Another rite of passage is circumcision. This is also usually done at age 17, as part of a group. The young warrior-to-be is expected to not make a sound when then circumcision is made. This is how he shows his bravery. With me in this discussion was Julie Winton, a nurse with BioRx, who had made the Kili climb. We both naturally wanted to know if there was any prolonged bleeding. With a population of 840,000, there is a good chance that the Maasai have someone with hemophilia. In fact, I recall in a previous visit to Kenya, maybe in 2001, I met a Maasai who had hemophilia, though he lived in the city and not in a boma.

As fierce as the Maasai are, they are really gentle, very soft-spoken people. Quietly, Lepapa said, yes, there are some who bleed excessively. What is the reaction of the elders, and those conducting the circumcision?

“They would say it’s a curse,” Lepapa acknowledged.

Julie explained about blood clotting, and that this wasn’t a curse. The two young men were very interested but explained the elders tend to be more superstitious. Obviously Daniel and Lepapa are more educated and have more experience with the world than perhaps some of their elders. Still, Julie and I thought how fascinating it would be to find a Maasai with hemophilia, and to try to bring care to them.

A huge challenge for many of the Maasai is that they live far into the savannah, and not near any major town. There is often not even a medical clinic for routine problems like broken bones. A clinic is something Daniel’s village needs, he noted.

It was a very interesting meeting of cultures; the young warriors (although Lepapa has admitted he didn’t kill his lion yet, and “..really have to in the next two months..”) were curious about our work with hemophilia, and Daniel’s eyes popped wide when he saw Julie’s iPad. He has seen them before, but hers had pictures of cows. Julie lives on a cattle ranch! The topic switched from hemophilia in Maasai circumcision rituals, to artificial insemination and calving.

That night we celebrated our climb by dancing with the Maasai. We joked that–we weren’t sure–but we think maybe my daughter Mary was married off to one of the warriors? They did say she was worth about 15 cows.

Great Movies, Which Showcase the Maasai

Mountains of the Moon

About Irishman Richard Burton (Patrick Bergin) and Englishman John Hanning Speake’s (Iain Glen) exploration of the African interior via Tanzania in the mid-1800s to find the source of the Nile, and how their friendship unraveled as a result. Incredible story. Stylish, action-packed, thought-provoking, and true. 1990

The Ghost and the Darkness

True story: In the 1800s, Irishman John Patterson (Val Kilmer) is chosen to build a bridge for the new railroad in Kenya. Work is delayed when two lions break all natural instincts and become serial man-eaters. Nicknamed the “Ghost” and the “Darkness” by the African workers, everyone lives in fear of their reckless killing. Up to 100 were killed, and Patterson seeks to kill them himself, but soon enlists the help of a lone hunter (Michael Douglas) who brings in the Maasais. Great ending, not to miss! Lush, beautiful film, score by Ennio Morricone, but adventure packed and intense, like an African “Jaws.” 1996

Kilimanjaro, Days 1-3 “The Enchanted Forest”

Our African travels now bring us to the Main Event—the Kilimanjaro climb. Up 19,370 feet in harsh weather in the middle of the night to raise money for Save One Life, our nonprofit child sponsorship program. Nine other people are now gathered Friday night in the lounge of the Kibo Palace Hotel in Arusha, Tanzania, to listen to two men, our guides, on whom our lives will depend, speak about our climb. With me are: my daughter Mary (17), Eric Hill, president of BioRx and son Alex (14); Julie Winton, RN, BioRx; Jeff Salantai (31), BioRx; Neil Herson, president of ASD Healthcare and his two daughters Kelley (16) and Brittney (20). The only problem is my gear is missing, as is Eric’s and Alex’s. Eventually mine shows up much later that night (after many phone calls), but Eric and Alex are completely without clothes and gear. They will need to rent gear from the outfitters, Team Kilimanjaro.

We were up at 6 am on Saturday at the hotel, and ready by 7 am. It’s a lot of packing to think about, being gone for 6 days in the wilds of Africa! We don’t really know our guides yet; there’s just one guy with a big smile that seems to connect with everyone. On the bus Julie got everyone to sing our theme, “Ain’t No Mountain High Enough”! She likes the Marvin Gaye version while I like Diana Ross’s. There’s lots of chattiness; everyone is excited.

Machame gate

It takes 90 minutes to get to the Machame Gate. Along the way we saw rural Tanzania, how poor people are compared to US standards. We stopped half way at a convenience store, where most of the team bought little bracelets from a street vendor. Soon we are at the Gate. This is where it all begins! We filed out, and saw pandemonium. There were hundreds of people swarming. Porters lingered everywhere, big bags of gear sitting in the muddy and dusty roadway, other hikers of all nationalities… we wait about an hour to complete paperwork. It’s a bit confusing. We start putting on our hiking gear—gaiters, backpack covers—while waiting. The air is chillier than I expected. Finally we’re done and we start. It seems surreal: all our training, planning, fundraising, and here we go!

Our lead guide is Jonas Gerald, tall and impassive, assisted by Jacob Slaa, the guy with the big smile, and Frank, who perpetually smiles. We hike today from 12:30 pm until 6 pm, with one stop for lunch. I am so surprised when on the trail we pull up to a table, chairs, and wonderful food, in the middle of a forest!

We will go through 4-5 ecological zones on this climb. Today we hike through the forest. It is beautiful: nice and cool, moist, on a defined trail. There is huge green moss growing up and around the trees like some fuzzy, green sloths. Lichens hang down from other trees like trails of lace on a Victorian gown. It seems an easy hike, not too steep, a few rocks, and a set trail.

Julie is amazing: she thinks of everyone else on this trip. Today she has snacks for everyone and keeps everyone hydrated. Even the guides and porters get snacks!

I like this trip because my 17-year-old daughter Mary is with me. She’s an impressive girl who hiked all that time with no poles. If I compliment her, she is quick to say everyone is doing great. Indeed, 14-year-old Alex, the youngest, is a strong hiker, as are Kara Ryan, and Kelly and Brittney Herson. I had wondered about the Herson girls and how they would fit in, as no one really knows them, but they are super sweet, strong, and soon, everybody loves them and their can-do attitude! We are fortunate to have a diverse group of 10 people who all get along well with one another.

We break for our first camp around 6:00 pm at the Machame Hut. We have a mess tent with a table, so we can all have dinner together. Dinner is hot veggies, celery soup, potatoes and fried fish. I learned Sama hani means “I’m sorry” (for stepping aside when porters brush by us) and Twende means “Let’s go!” (used often by our guide, Frank).

It’s fun to go to bed in our tent, with our sleeping bags. It’s been so long since I’ve done something like this, and I love it! And we are tired; we climbed from 6,000 feet at Machame Gate, to 10,170 feet tonight. We wait to see who will first feel the effects of altitude.

Day 2 Sunday, August 7, 2011 “Into the Mist”
I guess I didn’t sleep too well. I fell asleep from 9:30 pm to 11 pm, but the porters kept us awake till 1 am or so with their animated chatter. They work very hard; I’ve never seen anything like it. They are efficient, powerful and zoom by us on the trail laden with all our tents, food for 6 days, sleeping bags, and clothes, all bundled into sacks, which they balance on their heads. These porters are often young guys, slim, and often without great gear themselves. Some wear sneakers with tears of holes; they are gloveless in the cold and wear regular street pants. I was up until 2 am and then slept off and on. I had strange dreams.

“Young” Frank (not the guide), a sweet, 20-year-old boy with a shy smile, starts our day with a cup of hot tea. It’s so nice! Ellie, another nice young man, tags along to add sugar. This is luxury! We sip hot tea in our sleeping bags and begin our day. I put on make up in the morning sunlight, which makes Eric laugh out loud. I will abandon this practice the very next day. Contrary to my belief, it’s not all about how you look on Kili. We are all sharing a small stand-up tent for a bathroom, which has a portable toilet in it. If you think about it, it’s kind of gross, but honestly, when you are there, it seems perfectly normal! We are even grateful for this small luxury!

Breakfast is eggs, toast, jam, and porridge. Neil isn’t eating or saying much, and doesn’t seem himself. This could be early effects of the altitude. We’re worried about him.

The camp is crowded with other groups, including a loud Japanese or Chinese delegation. It looks like a refugee camp here!

We start out earlier than most groups, at 8:06 am. The climb today takes us away from the forest and into the heather, or moorland zone. The topography changes dramatically. It’s cool, and mist rolled in above us and around us. I feel surprisingly great. We will climb to 12,461 feet when the hike is done. We move more slowly today, with Alex the guide leading the way, steadying our pace. There are lots of rocks on the trail and narrow turns and ledges. The trees are beautiful! At first I think we are in a scene from the “Wizard of Oz,” when they come to a poppy field. Then later on, I think this is like a scene from Peter Jackson’s “King Kong.” Very primordial, with lava rocks and giant boulders.

A popular plant we see is the lobelia deckenii, or what our guide calls the “Antifreeze plant.” It closes up tightly each night to protect its leaves and unfolds to catch the morning light.

The air is crisp, cool, and moist; we don’t sweat much today. But the dust! The air is filled with baby-powder fine dust that infiltrates everything. Our nostrils are black, faces were smeared with dirty streaks, and our fingernails are ringed in black. Mary’s teeth even appear black when she speaks to me!

 

Up, up, and up we go. There is still a clear trail, which I didn’t expect. Sometimes the trail is made of stone steps, winding, twisty, steep. Neil falls further behind us, and I am next to last as I am kind of slow. Jacob stays with him while the rest of us push on. The air is thinner and it is harder to walk at 12,000 ft.

Julie and I hang out together, walking slower than the rest. I am also taking photos, which slows me down. The scenery is spectacular! We need to stop now and then to eat, take water. The porters truck past us on the trail, their loads frighteningly heavy. We are constantly shouting, “Porters right!” to let them by us.

Lunch break! We have peanut butter sandwiches, fruit and avocados, which Mary loves, and carrot soup, which is delicious! Then they bring out pasta and sauce! I couldn’t eat any of that. There is no sign of Neil at lunch.

We walk slowly the next hour and a half through the Shira Plateau to the next camp. This is when we get our first real look at Kibo, the dramatic summit of Kilimanjaro, rising up above the rocks, blue in color with clouds challenging its summit. At one point, I am totally alone! Not another human being in the place. It is glorious. I look all around, and hear nothing nor see anything. Just me and Kili. I wish it could have lasted longer. Privacy is one thing you don’t get on the popular Machame route.

I stroll into Shira Cave camp and am greeted by the others. I wash up for dinner and everything is black. My legs and arms were filthy black. Mary did well! She’s awesome. So strong and chipper. I’m so impressed by her.

Neil arrived around 4:50, a full 90 minutes after we arrived in camp. I bring him hot tea while his girls put him in his sleeping bag. I also brought him a Cliff bar for fast energy. When Julie comes on the scene, she takes charge to help; altitude sickness is serious and must be dealt with. We are so blessed to have Julie with us, as a nurse and compassionate friend!

Day 3 Monday “Walking on the Ocean Floor”

I took melatonin last night and had a great night’s sleep, despite the cold. I am shocked when I unzip my tent to see frost coating everything. I left my boots outside and they are frozen today. Huge white-necked ravens sit in the small trees near us, cawing for some food. (Which of course I toss to them) Sun strikes the far away ridges of the mountains, which are separated from us by clouds and looked beautifully surreal. We are actually looking down on the clouds! Breakfast is on, and I’m hungry. We had porridge, toast, eggs and jam. Mary is not feeling well. She looked so tired, pale and so weak.

After some discussion, it’s decided that Neil will go back down the mountain today. The rest of the trip will only get harder—and higher. It’s a loss to our group, as Neil was such a driving force behind our fundraising and so motivational for us all.

Today will be a long day of climbing, about 7 hours. We will go to 15,000 feet, then descend for the evening back to 13,000 feet, to help us acclimate. We hit the trail by 8:06 am and walk for two hours. Within 10 minutes we can feel the 12,000 ft. altitude. Our quads burn and our legs feel heavy. We walk in single file quietly, shouldering our back packs, following a trail that leads us toward Kili, heads down, like a herd of burdened, untethered pack mules. Frank is in the lead, walking pole, pole (slowly, slowly). It’s cold, but when the sun comes out, layers come off quickly.

We stop frequently as we tire easily. We sip water from our Camelbacks, and slow our pace. I want photos so I hang back a bit from the others. The terrain is more sparse now, just scrubby bushes with so many rocks! Some of the monoliths are huge, standing erect like those statues at Easter Island, keeping vigil over this ancient mountain. Small boulders dot the lunar-like landscape, with clumps of red straggly moss hanging off of them. It’s easy to remember now that Kilimanjaro is a volcano, and what I see around me were lava rocks from inside the volcano, deposited here long ago after an eruption.

I feel at times like I’m walking on the bottom of an aquarium, which someone tried to decorate to simulate the ocean floor. It occurs to me that this area may have been submerged in water millions of years ago; like the high mesas in Canyon Lands, Utah, where you can still see salt beds, remnants of a receded salt ocean millions of year ago.

It isn’t a difficult hike, but tiring, due to the thin air. Eventually we stop for lunch near the Lava Tower, and I find myself staring blankly. Jonas by now has removed and is carrying Mary’s pack, and we give her Neil’s poles. She is disappointed but agrees. Lunch is great: hard-boiled eggs, sandwiches, fruit, cornbread, avocado, and tea. Mary can only eat fruit. We don’t rest long. Today we climb to 15,000 feet, and then camp at 13,000 feet. So far, no altitude sickness.

After lunch we descend down a very steep, rocky path, into the Barranco Valley, and we trek through the alpine desert. It’s beautiful—for a rock lover like me, this is heaven. The rocks are enormous, pitted and some are shiny black. Mist rolls in and it becomes very chilly. Mary agrees with me that the topography looks like a scene from the movie Lord of the Rings. As we hike, we feel like characters in the movie. The air becomes dramatically colder and we all threw on more layers and rain gear. I think the temperature might be freezing, until I step in some mud and see a little rivulet. The wind chill makes it feel freezing.

The group soon forges ahead, leaving Julie and me with the unsmiling Jonas. I enjoy this walk the most. The alpine desert is hemmed in by ridges of Kilimanjaro, dotted with lava rocks, and decorated with the most unusual looking trees. We laugh that they look like those from a Dr. Seuss story, such as the Lorax. Truffula trees! They also at times remind me of saguaro cactus. These are the giant senecios. Hard to believe that they’re cousins to the daisy. I thought I might hear songs run through my head while gazing at such scenery, but no. My mind is silent, in the moment, observing and taking it all in.

We arrive at Baranco camp, where a few other groups await. Everyone is tired, and sits about doing their own thing: Mary, just resting; Jeff napping on a rock; Kara writing in her journal. I hike ahead of Julie and Jonas and had a bit more time to walk alone in solitude, which made me happy. This camp sits in a little valley, and is beautiful.

What will tomorrow bring? It’s much too cold to change clothes or even wash up. Washing in the hot basin that Frank brings each morning is great, but there is nothing to dry oneself on. Thankfully we brought little towels that seem to dry quickly. We do our best to stay clean!

Tomorrow, Day 4, will bring us to the foot of the summit path! More to come….

Kenya Day 3: MP Shah Hospital Tour

Having a good discussion is like having riches. Kenyan proverb

Chilly weather continued in Nairobi, probably about 65 degrees. Jeff Salantai, Julie Winton, Kara Ryan and my daughter Mary were all up by 7 am for a delicious buffet breakfast. Today we stayed in Nairobi, to visit the Health Ministry, the MP Shah Hospital, and the patients. Maureen again met us at the Southern Sun Hotel after breakfast and we set out in considerably less traffic. Within 30 minutes we arrived at the Health Ministry. We were disappointed to learn that Dr. William Maina, the director of non-communicable disease department, whom I met last year, was unable to join us due to a meeting. He did, however, graciously come to the parking lot to say hello and greet the American visitors.



With time on our hands, all dressed up and nowhere to go, Maureen took us to the Westland market to buy souvenirs. My colleagues were all first-timers to Africa, and Africa has a beautiful and colorful array of gifts: from Masai warrior shields in red leather, to stone carved animals, to pottery, beaded jewelry and the colorful Masai blankets made of wool. All at bargain prices! Everyone got an opportunity to bargain the prices, although most Americans are not comfortable doing this. We did have with us Paul Kamau, Adam, Isaac and Jagadish, who helped translate and then negotiate. There were so many vendors, with blankets spread on the concrete, wares displayed, hawking for our attention. Jeff and I decided to visit the vendors in the rear, as they seemed neglected. We laughed that it was like a hemophilia meeting, where the vendors in the front often get all the traffic!

We decided to have a sit down lunch (when traveling to the field to visit patients we often skip lunch entirely!) and Jagadish, who is Kenyan but also Indian, suggested a good Indian restaurant. The food was amazingly good and we relaxed and had many laughs. Our favorite moment was when Julie mistook the jalapeño pepper for a green bean (a green bean, Julie?) and we caught her reaction on film!

After lunch came the real purpose of the day: to tour the MP Shah Hospital and then meet the patients. Dr. Paresh Dave, hematologist, took us on a tour of the beautiful, private hospital, where many hemophilia patients find expert treatment. Julie especially was intrigued with their level of care. The hospital is clean and efficient. When asked what he needed that we could help supply for his hospital, we were surprised to learn that Dr. Dave requested butterfly needles! Imagine. The things we often toss away if they are not the preferred size in our factor box. Julie was proud to relay that Alex Hill (still en route to Africa at that point), age 16, had solicited two pallets of medical supplies for the MP Shah and shipped them, courtesy of his dad, Eric Hill. Though delayed in customs, the shipment was in Nairobi and butterflies were on their way.

After the tour, we went into the lecture room to meet the patients. I was beaming with joy to see so many I had met over the past two years. Flora, a lovely woman whose son Victor had passed away at age 15, just four years ago. Florence Odwar, who we had just visited on Monday, and her daughter Moline, who has VWD; Charles, who I had visited last year at his home, far outside Nairobi, now living in Nairobi and working, and proud father of baby Alvin; Gladys with son Justus and nephew Kevin, who wants to be a doctor. I gave lots of hugs to so many I knew; the Kenyans are truly warm and gracious, and really know how to make you feel welcome!

Dr. Dave opened with a warm and even funny speech about how much they have progressed as a team, and how he will commit to continue to help. Maureen reviewed the history of their society, and complimented her team on their help. She stressed the importance of patient and parent involvement. I also gave a brief speech to remind everyone that our foreign visitors were here to raise funds, so that we would have the money to start micro loans and scholarships through Save One Life, our nonprofit that works at a grassroots level in developing countries.

Flora spoke, Kevin spoke… it was very heart wrenching to hear of the loss of some children, but stunning to know even those who lost children are still working with the society so that other families would not suffer. These include Maureen herself, whose five-year-old son Jose died just four years ago.

Maureen asked Julie, Jeff, Kara and Mary to say a little something, so each guest got up and spoke. Jeff was very emotional in thanking everyone, as he realized fully his blessings in life compared to those with hemophilia in Kenya. Julie could barely speak as she was overcome with emotion, facing the towering strength and dignity of the parents, despite their losses and suffering; Kara and Mary thanked everyone for the privilege of letting them be a part of their lives.

After the speeches, we had tea and snacks, and Mary, Maureen and I handed out toys we had brought from the States. Stuffed animals are not common in Kenya, so these were a prized commodity! We also gave away kazoos, balls and T-shirts.

Julie had a brilliant and spontaneous idea: with all the patients present, why not conduct a home-infusion workshop? She simply got to work, and found her first volunteer. Many of the children have very hard-to-find veins, but Julie is a pro! Before she knew it, every patient in the room lined up for an infusion. In fact, we left her there to go back to the hotel to work out!

Kilimanjaro looms in our mind and I was getting a bit nervous not working out, after an intense two months of working out. Mary and I hit the gym and gave a good hour of cardio. We joined Julie, Jeff and Kara later than evening for a light dinner to review the remarkable day. “Having the good discussions” by the patients, and the home visits yesterday, have given them all a good slice of how Africans live with hemophilia, their obstacles to care and the culture that keeps patients quiet and uncomplaining.

Yeah, they are in love with Africa. I knew it would happen, as it happened to me, too, long ago.

Kenya Day 2: Return to Simon’s farm in Nyahururu

Nobody walks with another man’s gait. —Kenyan proverb

Tuesday, August 2, was Day 2 of our African odyssey. We were up early to have breakfast in the outdoor dining area of the Southern Sun Hotel. It was very cool, and we ate poolside and had a wonderful breakfast of hot tea, eggs, rolls and fresh fruit. Mary, Julie, Kara, Jeff and I reviewed our plans for the day, which involved driving to Nyahururu, over four hours, to see Simon, a hemophilia patient. Despite some jet lag, everyone was excited to have this adventure.

Maureen Miruka drove up around 8, along with a van, and several members of the Jose Memorial Haemophila Society—Paul Kamua, secretary at the society, Adam, and Isaac, all of whom have hemophilia. The biggest problem in Nairobi is traffic, which held us up for almost two hours. We finally broke free and hit the highway, unexpectedly spotting a lovely little herd of zebras alongside the road. The highway was deteriorating and very bumpy. We were jostled around for four and a half hours, until we finally came to Nyahururu. Along the way we passed lush countryside, and had a brief pause at the famed Rift Valley! Everyone admired the beautiful Masai blankets, did a little souvenir shopping and haggling before climbing back in.

Once in Nyahururu, we sought out Simon’s home. I had been here just last year to see Simon, and was really struck with how isolated he was. We climbed the rich red soil road, twisting and turning around every bend, rocks churning under our tires, until we reached his farm on top of a hill.

His farm gives a spectacular view of Kenya, and the sun was shining brilliantly. We piled out, and stumbled our way up the path through his farm. Scampering about were three yellow dogs: a mother and her two pups. One of the pups I easily recognized from last year. Now grown, he remained as friendly as he was last year, though his brother was completely untrusting. Chickens clucked about, and the family gathered around to welcome us.

Simon has a cell phone and texts me now and then, but aside from a cell phone, there wasn’t a single luxury. No electricity, no plumbing. We all used the outhouse, which was actually the cleanest outhouse I have ever used, and I have used many. There is something to be said for simple, optioned-style rural living. I imagine the stars are spectacular from his farm. Still, there is no doubt: Simon lives in total rural poverty.

As we sat down to a homemade lunch of fresh-killed chicken and nutritious mokina, a national dish made of pumpkin leaves, we all asked Simon questions about his knees, health and treatment of hemophilia. His knee remains completely unstable from the deterioration of the joint. Simon is one of the few in Kenya who knows how and is allowed to self-infuse. This is great, because it means he can infuse immediately when he has a bleed, which will spare him much pain and crippling.

As we ate, I looked about his interior: sheet metal roofing (very noisy when it rains), and two-by-fours covered with—get this—stapled cardboard. Very crude, very poor. Yet we ate delicious, fresh food that could have been served in any restaurant!

After lunch came a mug of steaming hot tea. Then a trip up the hill to the outdoor “mountain spring water” which pipes down to an outdoor pump. We can imagine that this is what our American ancestors had to deal with two hundred years ago!

Simon has been asking for a micro-loan so he can start a business, and our Kilimanjaro mountain climb can definitely help him accomplish this. I am really hoping to write within the year to let you all (or “y’all,” as Jeff likes to say) know that Simon got his micro loan and his business is underway. I’m counting on it, and it’s part of what motivates me to climb!

After a lovely afternoon with Simon, his brothers Richard and John, we gathered ourselves together and hit the road. Another 4.5 hours back to Nairobi and we were exhausted. Whenever we thought we were tired or sore, we all thought of Simon, what it must feel like to travel all this way to Nairobi for treatment, when you are also enduring a horrible bleed. It seems inconceivable, and made us silence any complaints. Simon, limping, in pain, still wants to start a business and do something with his life. For a brief time, Simon allowed us that rare opportunity to walk in another man’s shoes. Now we know what he needs—a micro loan—and now we can pool resources to make this happen.

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