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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Please help us save Abdi’s life!

Here is your chance to save the life of an Ethiopian student!

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Abdi is a 19-year-old university student, studying mechanical engineering at Welaita University. He is a very good student. And he has overcome a lot to get there.

Abdi comes from an observant Moslem family from the town of Asela. The family speaks Oromo language at home. They fast on Ramadan, celebrate on the holidays, and the boys walk to the local mosque every day.

He has 4 siblings: His older sister Hanan is a teacher, Mustafa works as a welder, and his sister Shekukri is a nursing student, and brother Melkias is in 8th grade.

His dad is a guard at a cow laboratory, and supports the family on $44/month before taxes. They own 1 cow, and do farming, producing 400 kg of barley per year. They live in a rented 3-room mud home with a corrugated aluminum roof (“korkoro” in the local language). Each room has a single dim light bulb. Water and toilet are outside. Their house rent? $3.70. Per year.

Abdi had a tough childhood. As his spine deformed, he was unable to walk on hills or long distances. Local kids would taunt him with the word “gobata,” a strong insult, meaning “hunchback.” Despite this, he was among the top 10 students at high school, and was admitted to a great school – Welaita University where he is a solid student, majoring in mechanical engineering. He gets help from his older sister, who send him $14/month for books and expenses.

All this is remarkable in itself, without a bad back – a boy from a poor family who has done great. But he walked into my office and said “I have a bad back, can you help me?”

We have examined over 3,000 Ethiopians with spinal deformities in the past 13 years, and he is one of the worst. His spine has been deforming since he was young, it is shaped like a saxophone, where T8 is higher than T2. While he is neurologically intact, his spinal deformity is literally crushing his lungs.

We own a breathing machine, and did lung tests – Abdi’s lung function (vital capacity) is 6% predicted. In the photos shown, we have used the CT scan’s “lung window” to show his lungs in blue, and the last slide is the lungs of a healthy 14 year old who had been scanned that day as well, for comparison.

Abdi is breathing with his abdominal muscles, and has no reserve. If he gets pneumonia, he will die. But we have done complex tests, “his heart is normal and the pressure in his lungs is not dangerous (minimal pulmonary hypertension).

Abdi wants to finish school and work as an engineer, marry, and have children. But Abdi’s condition is not sustainable. His only hope? Going to FOCOS Hospital in Ghana and going into ambulatory traction for months, followed by surgery to reshape his spine. There is no guarantee of success, but without this, he is bound to have a much shorter lifespan.

Our challenge: to raise $40,000 to help Abdi get to Ghana for surgery. Please help!

Many thanks,

Dr. Rick Hodes

Story and photos posted with Abdi’s permission

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Patient profile (8/24): Asaye

Asaye is a 15-year-old who graciously gave up his position in our last group to Ghana due to another patient who was in more urgent need. He is from Gambella, three days from Addis Ababa by bus, where his dad is a farmer. As a top student in his 6th-grade class, he dreams of becoming a doctor. Asaye has severe congenital scoliosis and will need traction followed by complex surgery to reshape his spine.

We recently sent 24 patients to Ghana for life-saving spine surgery, and we need to raise money in order to fund their treatment. Please donate today to help Asaye!

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Patient profile (7/24): Menbere

Menbere is a 22-year-old orphan who started spine surgery for her TB kyphosis in Addis Ababa last year. It had to be curtailed early due to lack of blood. She was partly paralyzed afterwards, but has gotten somewhat better. She is in chronic pain, and needs revision of her surgery.

We recently sent 24 patients to Ghana for life-saving spine surgery, and we need to raise money in order to fund their treatment. Please donate today to help Menbere!

 

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Patient profile (6/24): Bires

rick-hodes-ethiopian-spine-deformity-bires-1Bires, 24, was in a program for handicapped Ethiopians to learn tailor skills in Gondar. A classmate told him that he could receive spine surgery through us and advised him to find us in Addis Ababa.

He asked his brother, a priest, to bring him to Addis Ababa, but they did not have $20 for bus fare. The brother considered selling a cow, but his wife was not having it; so instead, they walked eight days to get to us — over 250 miles! At night they would knock on strangers’ doors and announce “we are guests sent to you by God,” and they’d be welcomed into homes.

Bires has a saxophone-shaped congenital scoliosis deformity, and he will need months of traction and complex surgery to reshape his spine. He has lost over 50% of his lung function.

We recently sent 24 patients to Ghana for life-saving spine surgery, and we need to raise money in order to fund their treatment. Please donate today to help Bires!

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Patient profile (5/24): Meseret

Meseret is a 26-year-old from Gondar who is at the top of his 8th-grade class. He comes from a family of farmers, and he currently lives with an uncle. Meseret’s dream is to become a doctor and return to his village.

He has severe kyphosis from TB (of the spine) and has lost 40% of his lung volume as a result. He will need months of traction followed by removal of vertebrae (VCR) to correct this.

We recently sent 24 patients to Ghana for life-saving spine surgery, and we need to raise money in order to fund their treatment. Please donate today to help Meseret!

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Patient profile (4/24): Brook

Brook is a 9 year old orphan who lives with his grandmother in Addis Ababa. Kind neighbors often given them food. He has an S-shaped juvenile scoliosis deformity. He must get “growing rods” to allow his spine to grow without becoming terribly deformed. Brook is at the top of his class, and wants to be a doctor.

We recently sent 24 patients to Ghana for life-saving spine surgery, and we need to raise money in order to fund their treatment. Please donate today to help Brook!

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