Genzeb & our newest crew of spine patients

Dear friends and supporters:

Warm holiday greetings! We spend Thanksgiving day in Ethiopia preparing 7 kids to go to FOCOS Hospital in Accra, Ghana for spine surgery. We purchased 100 kg (220 lbs) of dried injera, the Ethiopian staple made of the local grain “teff,” and hundreds of packets of “PlumpyNut,” a nutritional supplement made of peanut butter.

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Several of the patients need rod maintenance, and FOCOS has rods which it must use this month. But 2 patients are very tough cases who need world-class care to save their lives.

Five of us arrived at the airport together, but we were still missing 2 young boys. We phoned their parents – “We are here,” they said, “Where are you?” Turns out, they had gone to the domestic terminal, about a block away. We sent someone to walk them over to us. We said a group prayer and put them on the plane.

Now, I’d like to introduce Genzeb (“our fortune”). She is a 16-year-old girl from the town of Ataye in N. Shewa Province, about 5 hours north of the capital. Genzeb is at the top of her class (#5 out of 45 students) and wants to be a doctor. 2 decades ago, this might have been very difficult. But this year, Ethiopia has a female chief of elections, a female defense minister, a female chief justice of the supreme court, and…a female president! The doors are open to women.

Her dad is a farmer, her mom is a housewife, mother of 4. They grow teff, barley, onions, and spinach. They have 1 cow, 1 ox, and a male camel named “Anbessa” (lion) which they purchased from Afar people for $470. They live in a mud hut and only recently got electricity, now they have 4 light bulbs. They bring water from a local well – both the women and men carry. They bring 4 jerry cans twice a day.

I asked about her siblings. An older brother was not a good student and is now a farmer. Another is studying computers in Desse. One has psychological issues. And then there is Genzeb, a star student. She has had a rough time, students treat her differently, she walks to school alone, but is not often teased. And she knows that in 2018 she can go far and become a doctor…. or perhaps president!

What is holding Genzeb back? She is in 7thgrade, she weighs 52 lbs, and has a lousy appetite. Why? Her spine. She has severe congenital scoliosis, deforming her spine terribly. It has crushed her lungs, and her lung volume (FVC) is .61 liters – about 2 cans of Coke. It is 20% of what it should be. At this moment, her lungs make her inoperable.

I weighed her chances: on one hand, she has a couple of better signs. She is neurologically intact, her spinal cord is normal without splits or tethering, and she does not have neurofibromatosis, which afflicts 5% of our patients. On the other side, she has a terrible deformity, she is not very flexible, and her lung capacity cannot withstand surgery. Not to mention her nutritional level.

Without intervention, she is not expected to live more than a year or 2 – a case of pneumonia would easily kill her because she has no reserve. In the best case scenario, she could go to FOCOS Hospital in Accra, be put into ambulatory traction 23 hours a day (sitting, standing, lying, but not in the bathroom or dining hall), for several months. And do lung exercises during this time. We would feel much more comfortable if we could get her lung capacity up to 1 liter (about a quart). And ideally, decompressing her spine would decompress her stomach, and she could put on weight, both with a better diet as well as PlumpyNut. That is our goal. Genzeb is now in Ghana, waiting for evaluation this week, and traction to start. You can help save her life!

Thanks!

Dr. Rick Hodes

Photos: getting ready for the flight, at the airport, Genzeb, FOCOS Hospital including traction, and artwork done by a patient. 

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