Meet Habtamu, the aspiring Athlete

Habtamu-rick-hodes-ethiopian-spine-patient-1Let me introduce our latest aspiring athlete: Habtamu, 18. Habtamu hails from a village called Tilili in Gojjam Province, about 440 km from Addis Ababa. His dad is a farmer, growing teff, wheat, and corn. Mom cared for her 10 kids–Habtamu is #7. Both parents are illiterate. Ethnically, Habtamu is a mix of 2 groups, Amhara and Agau. “Pure Ethiopian,” he says with pride.

They live in a 1-room mud hut with a corrugated aluminum (“korkoro”) roof. They had no electricity but recently invested $105 in a solar system, which gives them 1 small light bulb at night.

Habtamu had a bad back since he was born. He reports he was paralyzed for about a year when he was 4 years old. His family took him to the “tsebel,” or holy water site. Not one, but 5 different sites, and not once, but 95 times! They would put holy mud (“eminet”) onto his hands, and holy water on his body. Eventually, he started walking again.

He went to school, but students were cruel, separating him and teasing him about his back. He felt bad about himself, and lonely. A couple of boys befriended him. And despite his situation, he studied hard and finished 10th grade (the basic high school level) in good stead.

One day someone told the family that there was treatment for him in Addis Ababa. “You’ll find Dr. Rick in a children’s hospital,” he was told. It was not so easy – the guards told them I had been there in the past. They tracked us down in the basement of a city hospital.

“I had never been to a doctor in my life, but everyone said there is no treatment for you. After the first visit, I had some hope, for the first time,” he explained.

“But Dr. Rick explained that my problem was very severe – I had a ALPHA deformity – my spine was displaced. In Amharic we call it a NEH deformity. And that this is very difficult to operate on. Some people do well – but some become paralyzed.”

“I asked what are my chances of a good life without surgery.” Dr. Rick explained “We think that everyone with your deformity will end up paralyzed at some point. We have patients like you who were well… until they woke up paralyzed one day.”

“I wanted to have a life. And my increasing shortness of breath was affecting me already. So I got a passport, and then I went with 20 others to FOCOS Hospital in Ghana. It was my first time to be with other kids like me. We were like a big family. Really. We love each other.”

“I was in traction for 5 months. Then I had surgery. (He had fusion from T1-L1, with removal of vertebrae (VCR), ended up with 4 rods, 19 screws, and a cage). After surgery I was completely paralyzed – could not feel my legs, could not walk, could not control my urine or stool.”

I started physical therapy, hours every day. I learned to wheel myself in a wheelchair. After 5 months I could control my urine and stool. And I started getting feeling back to my legs.

I returned to Ethiopia and someone offered me a place to live in the capital. A house on 1 level. I sit on the porch and walk slowly with a walker, back and forth, 100 times a day.

I wear a brace on 1 leg. Every step is difficult. But I am learning to walk again. This week I am faster than last week.

I want to return to school. I want to have my own store in my village.

He met a patient from S. Sudan in transit to Ghana for surgery. What advice do you have for Banak”?

“Be friends with everyone and they will be friends with you. Don’t be afraid, don’t be shy. And be happy. This is your chance to improve your life. It’s not easy. But it’s worth it.”

Hand’s Up!

When AIDS medicine first came out, patients went from near death to looking normal, in months. It was reported: “like Lazarus,” or “the Lazarus effect.” Lazarus is a common name in Ethiopia – Alazar. The name comes from the Hebrew Eleazar – “God is my help.”

I do not have great familiarity with the New Testament, so I had to look up Lazarus this week.

I learned that in John 11, Lazarus of Bethany died, and was raised by Jesus from the dead, after he was entombed for 4 days. In fact, Jesus said: “Our friend Lazarus has fallen asleep; but I am going to wake him up.” There is a discussion of death vs natural sleep. Jesus asks that the tomb be opened, and Lazarus, wrapped in what Ethiopians call “abujedi,” walked out. Jesus said “take off the grave clothes and let him go.”

Debre is a 19-year old girl from Gondar with neuromuscular scoliosis. She had been walking unassisted, but in the recent year or 2 had lost the ability to walk or to move her arms or feed herself. Others have to feed her and toilet her. We scanned her – both CT and MRI and found nothing surgical which could be corrected. We chose not to operate on her scoliosis.

I considered starting her on AZT (the AIDS drug), on the basis of its effects on P2RX7 receptors, but  AZT has only been studied in Duchenne’s muscular dystrophy, and she does not have Duchenne’s (it is a male disease). So I held off.

Debre was staying in Addis Ababa. I told her that we’d get her home to her family by Ethiopian Easter.  Debre wanted to pray before she left. She phoned my former assistant, Kaleab, and asked him to come to pray with her.

Kaleab is a former patient who then joined our staff. He is bright and dedicated to our patients. Kaleab tells me he is deeply committed to Jesus. I like Kaleab a lot, but he is not the first person I’d call if I needed a prayer partner.

Kaleab drove over, opened up the Amharic bible, and they read John 11, the story of Lazarus. Afterwards, Debre fell asleep. 2 hours lter, I was working on her air ticket and phoned to ask her date of birth. They were unable to wake her, and were very concerned that she might have died. After 5 hours, she woke up and began shouting. People rushed in, and she shouted out of tears and smiles: “I can move, I can move.” Debre had not lifted her arms in over a year, and now she could lift them over her head. She had not lifted her legs, and now she could lift them. I examined her – clearly she had new strength.

We reported this to Dr. Boachie, who is strong in his Christian faith. He replied: “Wow great story and testimony. Kaleab may not be a professing Christian, but he took a step of faith, and combined with Debre’s faith, God answered a prayer. It is a sign for Kaleab to know he has a gift and should use it.Many times Jesus said to people including sinners “Your faith has made you well.” There are many such instances in the New Testament.It is really a back to life experience.”

Dr. Kamal Ibrahim of Chicago, a dedicated Coptic Christian, said “Praise the Lord (any Lord according to every faith) – for me I praise Jesus for this miracle.  Rick, you are the miracle doctor and you have strong faith thus God works miracles through you!”

Thanks, but I take no credit here. I asked Kaleab what he thinks. He replied “Jesus did this, all glory belongs to him.”

Debre’s newfound strength is absolutely inexplicable in any medical manner.

She is back in Gondar, doing well. And now when Kaleab drops in, we call him “Aba Kaleab,” “Father Kaleab.” Debre_Hands_Up

Last Ask of 2018 + Annual Report

Dear Friends and Supporters,

As another year comes to a close, I want to thank each and every one of you for your unwavering support. We made incredible progress this year, which we simply cannot do without you. Please take a moment to look at our 2018 Annual Report to see the extent of our impact.

But this is just the beginning. Now it’s time to build on this momentum and take our work to the next level. To do this, we’re making one final fundraising push before year’s end. Please donate now to help the hundreds of patients who need life-saving treatment.

With deep gratitude,

Rick Hodes, MD

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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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