Bleeding Disorders

Far More Than an Adventure

Adventure With a Cause

In 2016, Eric Hill, chief operating officer at Diplomat Specialty Infusion Group, and his son traveled to Kenya to climb Mount Kilimanjaro. Far more than an adventure, their trip was dedicated to raising money for a nonprofit dedicated to assisting people living with hemophilia in developing countries. Along the way, they met many of the families whose children benefit from such assistance. For patients in the United States, hemophilia is a manageable condition. For the families Eric met, hemophilia makes daily life a challenge in all sorts of ways.

Here are some of their stories as recounted by Eric.

 

Three Families, Three Unique Stories

On the first day, we met with three families.

Jeff and Linda live in a suburb about 30 minutes outside Nairobi with their two sons: Francis, a 7-year-old with hemophilia, and Daniel, a 3-year-old with hemophilia. The father drives a truck and earns $5 per trip. He gets about four trips each week—if he’s lucky. In a good month, he earns $80. The mother can’t work because she has to be available to deal with the kids’ health care. Francis’ hemophilia is much worse than Daniel’s. His left knee is already wrecked from repeated bleeding episodes. This was one of the more well-off families we met. They have access to medications and health care. These boys are adorable, but it’ll be a tough life for them.

The second family we meet is in a village called Githunguri. Robin is a 20-year-old hemophiliac who is nearing the end of a college course in journalism and media. His cousin Dixon is a 22-year-old hemophiliac who just finished college coursework in graphic arts. These kids cannot do manual labor. For them to be productive and provide for the extended family—as sons are expected to—they must get professional work.

These visits always start with sort of a formal introduction. This is typically followed by a discussion of the family’s situation and the impact of hemophilia. In this instance, unbeknownst to us, the family prepared a meal for us. The meal comprised mukimo—mashed-up potatoes, green maize, and peas—beef stew, cooked cabbage and carrots, and fresh salad of parsley, tomato, and onion with citrus juice. It would have been unheard of for us to not eat their meal. They had undoubtedly spent weeks and weeks of their income to provide it for us. My son, Andrew, looked at this with wide eyes, and I mouthed, “You have to eat it—all of it!” He was a champ. The meal, while simple, was really good. The meat in the stew, however, was very sketchy. I just closed my eyes, swallowed—and didn’t chew.

Finally, we visited Stanley, a 40-year-old adult hemophiliac who, like all of his extended family, is a subsistence farmer. Stanley has three children. His only source of income is five liters of milk he sells from his cow each morning. He gets about $0.50 a liter, so he earns about $2.50 a day. He has to carry the milk about three miles each day on bad knees to get it to his buyer. This is one of the kindest, gentlest men I’ve ever met.

hemophilia in Nairobi

Eric and his son Andrew with two brothers in a suburb of Nairobi, Kenya

Hope and Heartbreak

Next, we visited an 8-year-old boy named Derrick and his family. We visited five years ago. The then 3-year-old Derrick had an enormous hematoma on his forehead and an active bleed. It was the size and shape of a good-sized yellow squash. This continued to grow and became a pseudotumor (a permanent mass of tissue and blood vessels). It was so big it was weighing his head down. He had it removed in the past year. As you can imagine, he’s a new boy, although his severe hemophilia is still a train wreck.

This family is led by a matriarch (grandmother) who is one of the strongest, happiest, full-of-life humans I’ve ever met. She is absolutely beautiful. She dresses in colorful garb and makes a point of giving everyone a huge hand-slap shake and a bear hug like she’s known them forever. We have a long visit with this family. It was just hard to leave them.

Have you ever been happy and sad at the same time while looking at the same thing? I am so happy for this family. They have had a victory with Derrick. They all seem so happy, and the kids seem well cared for and well-adjusted. The family structure seems to work for them, and they seem to have what they need. They have achieved something elusive in American society: happiness!

At the same time, you step back and your heart breaks, because you know life for this boy will be a struggle. It will be filled with excruciating physical pain, almost assured disability, risks around every corner, and very limited job prospects unless something changes and they get him enrolled in a private school. His mom may never marry because “she births sickly kids,” and the strength in this family, the grandmother, is aging.

Three boys in a remote village outside of Muranga. The boy holding the stuffed animal is a severe hemophiliac.

The Luxury of a Refrigerator

We drove down the street and met a young man named Peter. We got out of our trucks and walked down a path to Peter’s house, where we were met by his mother and aunt. Peter is a 27-year-old moderate hemophiliac. Peter is in fairly good shape but has a problem elbow and his knees give him problems off and on. He does a good job of managing his disease, but the last time he went to the hospital for some factor, they only gave him 750 units. His dose in the U.S. would have been about 3,000 units.

Peter studied to be an electrician. He just finished school and is doing an internship with a power company. Peter’s house, although a mud shack, has been wired for power, and they have a working light in it. We gave Peter enough factor to keep on hand for a bleed. The original plan was to have him label it and take it to the hospital for storage, but we were fairly sure the hospital would just use the drug. After meeting the family, we all huddled together. One woman in our group grabbed us and said, “We are buying this family a fridge.” We were all like, “Hell yeah, we are! Um, how do we do that?”

 

refrigerated factor
As fate would have it, our new friend Sarah was from Murang’a. She talked with a few people and learned there was a place not too far up the road that could sell a small one for $200. A refrigerator not only means reliable storage for Peter’s factor but access to cold storage for the first time. Chew on that. A cold drink is a luxury.

It was a great trip. We learned a lot, we grew to appreciate our blessings, we gave a small bit of comfort and aid to a few families, and we made and strengthened friendships. Not bad work if you can get it.

 

Sunrise at 18,500 feet

 

 

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