Jose Memorial Haemophilia Society

Kenya: Brian’s Story

Friday August 2, 2019

“…Africa is a place where the people do not need limp gifts of fish but sturdy fishing rods and fair access to the pond.”  Chimamanda Ngozi Adichie

You can never know the needs of a person until you visit them in their homes. And we seek to know the needs of those in Kenya with bleeding disorders. So off we went today, to visit several families in their homes. This meant hitting the road around 8 am. With us, the Kilimanjaro climbers and Save One Life executive director Chris Bombardier, were Maureen Miruka, president of the Jose Memorial Haemophilia Society, Kehio Chege, father of a child with hemophilia and cofounder, Sarah Mwangi, dedicated JMHS employee and program manager, and Isaac Maina (Waithaka Maina), a young man with hemophilia who volunteers. We had two vans, and piled into them for our two hour journey to Murang’a.

The way to Brian’s house

We first made stops at the Murang’a District Hospital, and visited three families we know well–I’ll blog about them next time!

But the most exciting part of the day was meeting a new beneficiary and last child of the day to visit: Brian Mungi. Daylight was fading as we bounced and jostled down the dirt roads, lined with towering banana trees. I was excited to meet Brian, who just got sponsored by Dr. Len Valentino, formerly of Rush Hospital in Chicago and now with Spark, who I’ve known for years. We finally pulled up to a section of forest, and filtered out. Then a short walk down a well-trodden dirt path, so overgrown it felt like passing through a huge green tube.

Brian Mungi

The extended family was there to greet us: mother and father (James), grandmother, aunts and Brian and his cousins. Our entourage was pretty big too. The climbers: Myles Ganley, Shannon Peterkin, Mike Adelman, Jim Palmer and son Sam, and Wendie and Ric Chadd. Save One Life Executive Director Chris Bombardier. JMHS members Kehio, Isaac, Maureen and Sarah. And two amazing nurses from Murang’a District hospital: Judy Mwaura and Jane Mugacha.

The house, nestled into the forest, was made of steel sheets. The roof was corrugated steel sheets so the rain can run off it. (The noise made by rain falling on steel is deafening) The house was rusty, giving it a burnt red color. And the entire family lived there, despite a dirt floor and no screens on the windows to protect from mosquitoes. And no glass either. They have electricity, evidenced by the naked bulb dangling from a wire above the doorway to the home. But they had no refrigerator. Imagine living miles and miles from any store, not having a car or any transportation and lacking a fridge!

This is almost as poor as it gets.

And yet they were happy. And they were thrilled to see us. We saw right away the fire outside, and pots of food. Mutilcolor plastic chairs were brought out with decorum from a wooden shed. Nearby, a lowly cow, standing in muck, watched and mooed pathetically for attention. But the family was busy attending to us. The women stirred pots of delicious smelling food: they had prepared a feast for us! We suddenly realized we were hungry. Brian, age nine, watched quietly but with a shy smile. Brian had only been diagnosed two years ago, after visiting the Kenyatta hospital in Nairobi, two hours away.

Brian with his father, James, a schoolteacher

The father, James, shared with us about how he grew up in this house as a boy, and now lives here with his family. He is a teacher, and spoke English precisely and eloquently. How they all manage to live together is remarkable. They did not seem scared of hemophilia; I think knowing how well the Jose Memorial Haemophilia Foundation cares for them makes them feel secure. And with his sponsorship, and access in the future to scholarships and factor, Brian can lead a healthy life. In fact, Brian may be the future for this family. He now has a lifeline and a path out of poverty. I started brainstorming the many ways we could help them: transportation, a new cow pen for the poor creature, a fridge, clothing.

Save One Life founder Laurie Kelley with Brian

Dinner was ready. Despite our being hemmed in by a forest of banana trees, and scuffing up the rich red soil of Kenya, the women were adamant that we all wash our hands. A pitcher of warm water and soap did the trick. We each took a plate while the women served us a delicious meat stew, rice, and mukimo—my favorite. The food was freshly killed, plucked, picked and cooked, giving it a rich flavor. The women stood aside while we, the guests, and the men ate.

I’ve been to multimillion dollar galas and hung out with celebrities, but none compared to the hospitality and class of this family. Class truly does come from within.

As darkness fell, it was time to leave. We had a long ride back. With many handshakes, hugs and promises, we walked away from the little steel shed they call home, and back up the hill to the vehicles. Like the other families, I will see them again on my next trip. And hopefully bring some items to ease their burden. They already gave me their gifts: hospitality, graciousness, and the opportunity to serve.

To sponsor a child or learn more about Save One Life, go to www.saveonelife.net

A feast for the guests!

“The journey is not easy…”

I’m writing from Arusha, Tanzania and tomorrow I start my hike up Mt. Kilimanjaro, the highest free-standing mountain in the world! This will be my third time. I summited in 2011 and 2016—no easy feat! Why, at age 61, do this again? To raise money for our mission—Save One Life. We’ve asked our community to help support our many programs in developing countries and donations are pouring in! Also, my fellow climbers are members of the community who want to experience a world vastly different from their own first-hand, at ground zero. To experience even for a day or two, the lives of the poor with bleeding disorders in a developing country. It is an experience they will never forget. So much so, that two of our climbers climbed with me in 2016 and have returned. And I thought I was the only crazy one!

I want so much to detail the trip right from the beginning, but there was been zero time to write or journal. A few hasty Facebook posts is all I could manage. After the climb, I will share so much more. But first, the most impactful—and unexpected—part of the trip.

Our in-country program partner, The Jose Memorial Haemophilia Society, established thirteen years ago by Maureen Miruka, mother of a child with hemophilia, took us to visit families in their homes. This idea is what distinguishes us from any other program in bleeding disorders and we not only insist on this, but we love it. But Saturday we did something different and new.

We drove to Gertrude’s Hospital, a stunningly beautiful, colorful and peaceful hospital in Nairobi. With my seven other companions, we attended a Women’s Group at 10 am, and a youth group simultaneously. The six guys took the children and young men into one room, while Wendie Chad and I, along with Maureen and assistant Sarah Mwangi, welcomed the women.

We were stunned as 28 women filtered into the room. And more kept coming over the next few hours. What was to be a 2-hour meeting stretched to over 4 hours as the women poured their hearts out. We sat in a big circle, and after a lovely prayer by Mrs. Mwangi (no relation), we went around the room. The women were a bit tentative to share. Usually all the attention is on the boys. One mother started by saying how her husband abandoned the family because he couldn’t deal with all the hospital stays. Now she has to work, cleaning houses and earning next to nothing.

Another mother optimistically said, “You have to have hope for tomorrow when you find that you are not the only one.” She lost four family members to untreated bleeds. While Kenya now has a steady though small supply of factor from the WFH and us, it is never enough.

One mother shared how her neighbors shunned her; another, how her own family turned on her. One mother was accused of witchcraft (yes, this is still a belief in rural parts of Africa).

More mothers and women kept coming in. A mother in a gray shirt shared how her first child died of a bleed. When her second son showed symptoms of hemophilia, her physician (at a major hospital!) told her son just needed more protein.

You almost didn’t need to know Swahili to know what they were saying: the pained expressions on their faces, the gestures to the elbows, knees, ankles as they spoke. One mother started to share and seconds later broke down in tears and sank back into her chair.

There was a rhythm to the conversation: the mothers started out quiet and shy as they shared. But each shared story empowered them to speak up. But the more they spoke up, the more emotional they became, and so started carrying, then reverted to being quiet. This would then encourage another mother to step up and share, and the rhythm started all over again. It was remarkable!

Maureen at last summarized the themes as the mothers shared: the need for social support; family planning; micro businesses (so the women do not have to be so dependent on men); stigmas of being different; becoming single moms as the husbands left.

The most powerful moment of the day was yet to come. Maureen presented sanitary kits provided by a nonprofit in Michigan called Days for Girls. Their motto: “Turning Periods into Pathways.” The kits were in pretty cloth bags and contained reusable menstrual pads. Some of the women present were not only mothers of children with hemophilia, but experienced heavy bleeding themselves. Physicians almost never diagnose mothers with hemophilia, but if their factor levels are below 50%, they could have mild hemophilia.

There is such a stigma around women and bleeding! We all know it, but we forget. I forget. I listened as woman after woman then shared their bleeding stories, how ashamed they feel, how isolated. It was so sad. They suffer a double blow of having a child with a serious medical issue, and then suffering themselves. Just to have them present and in a safe space where they could share, visibly empowered them! Maureen showed the contents of the kits and passed around many of them. The women checked them out and eventually all the kits found a home. The women were grateful and thrilled.

Maureen told us how women in Kenya in villages do not have access to pads often, and either use rags, or worse: they isolate themselves from their families, and stay in a corner of their thatched roof, mud hut or concrete home, and simply lie down and bleed into the sand for days. This is primitive and degrading.

What’s really amazing is my team, in cooperation with the Jose Memorial Haemophilia Society came up with this great idea and will work in partnership with Days for Girls to provide more kits and education. I am so proud of them!

The day ended with tears, smiles, laughter and of course tea! We hauled out suitcases filled with donated toys to distribute to the children. And before we disbanded for the day, the women all put a date on the calendar for the next support group meeting!

Let’s hope my climb tomorrow is as successful!

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