Meet Meseret, a young lawyer who perseveres despite her spinal deformity

Look at this determined woman!

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Meseret is not only a survivor – she is an example of how far a woman can go in Ethiopia! A native of a rural area outside Bahar Dar in NW Ethiopia, she is the daughter of a farmer and housewife. Her dad has an elementary education, and her mom is only able to sign her name. She grew up in a mud-walled home. But she was determined to do something more than simply stay in her village and get married in her teens as many around her do.

Around age 12, she developed a spinal deformity and was bullied in school. She was called “gobata,” a very strong insult, meaning hunchback. Classmates would say “You’re always carrying something on your shoulder, put it down.” After school, she would return go home and cry. But the next day, she’d be back in school. Even as she recounted this history to our team, she stopped and cried for several minutes, then reached for a tissue and continued.

“Ninth grade was the worst. I was depressed and had no appetite. I went down to 22 kg (48 pounds). But I kept going. And every year I was in the top 10 of my class. Even in 9th grade, I ranked #5.”

She studied continuously. She graduated from 10th grade #7, then went to preparatory school. From there, she went to Jimma University, where she studied law. Meseret returned home to Bahar Dar, and entered a 2-year training to be a judge. After the training, she was assigned to be a federal prosecutor in Gondar province. After 2 years she wanted to support her family better, so she opened a private practice. She had about 20 new clients a year and made enough money to help her parents, send her brother and sister to school, and even help some cousins. But her spinal deformity was getting worse and she was in constant pain.

Earlier this year, Meseret entered a masters degree program in human rights. A friend in Addis Ababa let her move in with her.

Medically, Meseret has a severe kyphoscoliosis. Her angle from front to back (AP) is 140 degrees. And her angle from the side (lateral) is also 140 degrees. This complex scoliosis is compressing her lungs – lung capacity is down to 39%. However, she is still operable. Meseret needs to travel to FOCOS Hospital in Ghana for several months of traction (23 hours a day) followed by an 8-hour surgery. With traction and surgery, a lot of her deformity is correctable, and it she would have a much better life.

I asked what she’d like to do in the future. With hesitation, she said “I want to finish my master’s degree in human rights and help Ethiopian women, especially the handicapped and those with spinal deformities. Our women need to be stronger and more independent, and I can help them,“ she said with a determined smile.

 

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These amazing brothers walked 400 miles to get to Dr. Rick!

1A few weeks ago, two brothers came to see me in clinic. Standing in front of me, I observed by his headgear that the elder is an Ethiopian Orthodox priest. The younger brother was clearly the patient, with a severe kyphosis and right-sided scoliosis.

I looked down and saw that the priest’s shoes were nearly torn in half.

“What happened to your shoes?” I asked.
“We walked here,” he answered.
“From the bus station?” I asked. The bus station is 5 miles away.
“No, we walked from Gojjam,” he answered.
“Gojjam?” I said in astonishment. “That’s nearly 400 miles from here.”
“Yes,” he replied, “it took us 8 days.”

I needed to get to know these amazing people. “Tell me your story,” I said.

Bires sat down and spoke: “I come from Gojjam in northern Ethiopia. It takes a long day by car to get to Addis Ababa. I attended school until 8th grade, but I suffered in school so I quit in order to support myself as a shoe shine boy. One day, one of my customers saw I had a bad back and told me about a government program to train disabled people to become tailors. That was in Gondar, about 100 miles away. I thought that would be a better life than shining shoes, so I went to Gondar and learn to sew shirts and trousers. But I had no money to purchase a sewing machine, so my new skills were not very useful. But going to Gondar was actually very helpful because it got me here.”

“My dad was a farmer. He died suddenly when I was 11. My mom could not plow the land herself, so she had to hire a farmer to plow our land and pay him half of the money we made. It was very difficult. I have 2 brothers and 2 sisters. My older brother is a priest and lives with his wife and children.”

“My spine deformity started when I became a teen – it’s why I quit school. The students mocked me by saying ‘are you carrying a football on your back? Take it out, let’s play.’ My life became unbearable, and I quit school.”

“You see, I started life as a poor boy and strived to get a good education, like every other kid around me. Later, I was a poor, sick boy who was mocked by everyone around me. I had nobody to help me. I could not afford to go to a doctor. Instead, I went to holy water every year. I would go for the two weeks before Easter, and one week while we fasted for St. Mary (Filseta). We fasted (ate only vegan food), helped the monks, and went into the water every day. I observed people with evil spirits and mental illness get better, but we who had deformities never improved. My spine continued to deform.”

“There was a student in Gondar named Temesgen, also training to be a tailor. After a few days, he approached me and told me a story. ‘I used to be like you,’ he said. ‘I had a terrible back.’”

“I could not believe him. He looked normal! We went to a private place and he removed his shirt, and showed me a long, thin scar on his back, and told me that was what remained of his disease. He explained how a ‘ferenj’ (white) doctor named Rick helped him.”

“I was amazed. It never occurred to me that I could be cured. He said ‘This doctor may be able to help you.’ This seemed like a dream. But it was worth a try. I spoke with my brother, the priest. He did not believe it either. But I told him I had met Temesgen and seen proof with my own eyes. He suggested we should travel to Addis Ababa to find this doctor. But we had no money for the bus. He wanted to sell a cow, but his wife refused.”

“‘OK, we will walk,’ my brother said with determination. ‘We will rely on the Almighty to help us.’ We left Gojjam at 5AM when the birds started singing. It was a Saturday – we had a lot dried injera (staple food) and 50 birr – $2.16 between us”.

“We were lucky that we were in Gojjam, and the Christian tradition includes hospitality towards guests. You have only to show up at a stranger’s home and say “I am a guest, sent by God – ye’egziabeher engida. ” They will welcome you.

“As it was getting dark, we were afraid of hyenas, and we could not walk any longer. We would simply knock on a door, we would greet them and say ‘Hello, we greet you sincerely. Have you been well? We are walking to Addis Ababa for medical treatment. We are “God’s guests – ye’egziabeher engida,” please help us.” They would let us in and we would explain that we are walking from Gojjam to Addis Ababa. They would say “Please show us your ID.” We would take the ID, and return it in the morning. They would put animal hide on the ground, and we would sleep there. Sometimes we’d sleep in the house, sometimes on the veranda.”

“Only once there was a woman who was alone and was not comfortable to take us in, so we went to her neighbor. We would leave just as the sun was starting to come up.”

They always gave us a lot of food. They would give us a basin and cold water we would wash our feet. I always offered to wash my brother’s feet, but he never agreed.”

“We spoke with people as we walked. We ate dried injera and with the 50 birr we had some drinks, “tella.”

“When we got to Addis Ababa, we were so hungry, and my brother paused to pray at the roadside. A stranger asked us what we were doing and we said we had walked from Gojjam – he gave us 100 birr. We used this to buy a real meal. ”

“We arrived in the capital and went to a hospital, looking for Dr. Rick. They sent us to another hospital. It was getting late, we went to Giorgis church to sleep. There were a lot of people there. They gave us a flattened box to sleep on, and fed us all. God bless my people. The next day we found Dr. Rick. He asked about my brother’s shoes, and we told him the whole story. He did exam and x-rays. My curve is about 160 degrees. He told me several of my vertebrae are fused together. And that I need to go to Ghana for traction and surgery at FOCOS Hospital.”

I asked what he’d like to do in the future. “If I can raise money, I’ll buy a sewing machine and move back to my home and open a tailor shop.”

I felt humbled to be in the presence of these amazing, determined people. To have a terribly deformed spine and having lost about half the lung capacity, and then set out on a 400-mile walk with a few dollars in pocket and some dried injera, relying on the kindness of strangers was clearly a journey of faith. I assured him, we’ll try to get him traction and surgery. Please help us.

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It all started with Tesfaye, now help us Bring Back Hope!

Eleven years ago, Tesfaye met Dr. Rick at Mother Teresa’s Mission in Addis Ababa. He had come in from the countryside, in hopes of getting care for his terrible spine.

SpTB Tesfaye Negussie 2-2006 - 5-2010 - 39A bio written in 2009 stated:

Tesfaye was born in the Gojjam region of Ethiopia to farmer parents. He grew up in a one-room, thatched roof, mud hut, which he shared with parents, four brothers and one sister. His mother and father farmed grains, mostly tef and barley.

About nine years ago Tesfaye’s father died; leaving his mother to farm and care for the five children herself. Several years after his father’s death Tesfaye decided to come to Addis Ababa with his oldest brother to seek medical care for his misshapen spine.

His back problem began when he was eight years old, a result of untreated spinal tuberculosis. Growing up, his family took him to the local healer who blessed him with curative holy water, but the pain and deformity did not improve. By the time he was a teenager the pain was so severe that he decided to leave his village and travel to Addis Ababa, in hope of treatment. Tesfaye traveled three days by bus with his brother, neither of whom spoke any Amharic, the national language and dominant language in the capital city. Tesfaye and his family are from the Agau tribe, a small population in the north of the country that speaks their own language, known as Agau.

They arrived at the bus station in the large market area, the Mercato, and went immediately to Black Lion Hospital, where the hospital staff told him they could not treat him, promptly sending him and his brother away. Talking to some street children Tesfaye and his brother heard that the Alert Leprosy Hospital may be able to help him. They went eagerly, but were turned away for a second time.

The brothers rented a small room for 1 birr per day, about 0.10 USD and stayed in the capital hoping for a miracle. One day a woman stopped them on the street and asked Tesfaye what was wrong with his back. He told her that he had no idea but that he was in a lot of pain and was trying to find treatment but no one was helping. She told him that the Mother Teresa’s Mission may be able to help him, and gave directions to the mission. Tesfaye went to the mission early the next morning and the nuns admitted him without hesitation.

For two months Tesfaye lived at the mission where he received tuberculosis treatment. After two months he was discharged from the mission but returned each day for the next six months to complete his eight-month TB treatment. After leaving the mission Tesfaye shared a room with his brother who had begun work as a day laborer in order to stay in Addis with Tesfaye. To contribute to his brother’s earnings Tesfaye began pushing a wheelbarrow filled with various novelty items, such as BIC pens, Kleenex travel packs, sunglasses and chewing gum. He peddled—almost literally—his wares around the large marketplace, earning between 5-10 birr per day, about 0.50-1.00 USD.

Several months later Tesfaye contracted scabies, a result of squalid living conditions, and went to the mission to ask the nuns for treatment. He was given the proper medication and was on his way out of the compound when another nun stopped him and asked him if he knew a Dr. Rick. Tesfaye replied that he did not know any doctors, especially not a faranje—or foreign—one. The sister told him to return the following Saturday to meet Dr. Rick, who, she explained, helped Ethiopians with deformed spines. Tesfaye came early Saturday morning and waited patiently for his turn to meet with Dr. Rick, during his usual Saturday morning clinic.

Dr. Rick not only accepted Tesfaye as a spine patient but also arranged housing for him, and funding for school. Six months later in 2007, Tesfaye traveled to Ghana with eight other spine patients to undergo spine surgery performed by renowned Ghanaian surgeon Dr. Oheneba Boachie-Adjei. All eight other patients were operated on, but Tesfaye’s case was too complicated and the anesthesiologist did not want to risk operating on him. Tesfaye returned from Ghana unchanged. Tesfaye traveled to Ghana two more times to no avail. He went with each new group of patients every six months for the next year, but still no anesthesiologist wanted to take the risk. Finally, disheartened, he gave up and resigned himself to the fate of living his life with a back shaped like a Brontosaurus or Quasimodo. (That was before the FOCOS Hospital opened, which has superior capabilities).

Tesfaye became everyone’s favorite person, if he were to run for office, it most certainly be a landslide victory. Tesfaye is kind, patient and helpful. He is always doing his homework or helping the younger children with theirs. In anticipation of his trip to Canada, Tesfaye has been diligently attending English class four days a week to supplement his 5th grade curriculum. I asked Tesfaye what he is most excited and nervous about for his trip. He answered that he is most nervous about people making fun of his back and that he is most excited about being with people who show him love.

Last fall I took a social history of each of patients Rick was assisting. Tesfaye politely told me, “I do not want to talk about my history until I know what the ending will be, I still hope thanks to God, and Dr. Rick, that my back may be healed.” Now, we pray, that time has come, and so, Tesfaye has shared his story with me. We all look forward to discovering the end of the story. I know he will live happily ever after.

Tesfaye now has hope. He met Canadian philanthropist Gary Segal and his amazing wife Nancy. They arranged for him to have surgery at Vancouver General Hospital in 2010 by Dr. Marcel Dvorak. Take a look at this story here:

http://tesfayesjourney.blogspot.com/

From that came a tremendously successful fundraising dinner called “Bring Back Hope” in 2012. Now it’s time for more hope.

Since that 2012 dinner, we have gotten about 1,500 new spine patients, including 6 new patients this week alone! And we’ve done hundreds of surgeries.

We need your help to fund surgeries and expand our reach.

More information: https://www.bringbackhope.com/

American Registrants: https://donate.jdc.org/events/-/e123942

We need your help! Thank you, thank you!

Dr. Rick, Gary Segal, and the JDC-Ethiopia Spine team

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Two trips to Ghana, 1 scheduled, 1 emergency

We had been planning this for weeks. And on the last day of 2016, we got 22 Ethiopian kids to Bole Airport at 6:00AM to head to FOCOS Hospital in Accra for traction and surgery. We have been doing this for over a decade. At times everyone shows up on time, and we can check-in on time; other times someone does not show, someone oversleeps, a taxi forgets a pickup, or a mighty rain causes havoc.

img_9559-1This time we were lucky: the weather was cool and pleasant, six kids from far away slept at a site we arranged so that we could get them to the airport, and the rest showed up early. We had a group prayer then headed to check-in. The group was headed by former patient Kaleab, now a JDC staffer. Kaleab made sure that everyone ate and knew how to use the airplane toilet, and the kids loved watching videos en route.

He spent four days introducing them to the hospital and helping to translate for their initial exams.

Then he brought four patients back home to Addis Ababa.

We had not planned a trip to Ghana very soon. But several patients had rod complications and need revision. These complications are quite routine, and we are used to this. But what really scared us is when Mushida, showed up in early January, newly paralyzed. She’s had a bad back for years, and an underlying genetic condition called NF (neurofibromatosis). But when she woke up paralyzed, her family started looking for help. It took a few months for them to find us.

We carried her to into the CAT scan, and observed the real-time reconstructed images of her spine. Mushida has a Z-shaped spine. It comes down on the left side of midline, then becomes level, then continues down on the right side. We call this shape “translocated,” or “gamma.” We have several.

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Mushida’s z-shaped spine

 

And we have experience with this. Aliyah, our last patient like this, came to us paralyzed, we brought her to FOCOS Hospital in Accra for months of traction, surgery, and therapy, and is now walking. In fact, she came to clinic today for follow-up. So it’s actually possible that Mushida might walk again. There are a few hopeful signs: she has some leg motion, she had brisk reflexes, and she as some feeling in her legs, and she is continent.

There was one other issue though: Mushida comes from a distant area and only speaks the Oromo language. Our staff in Ghana speak several Ethiopian languages, but not Oromo. We checked our records: our patient Mohammed, 18, speaks both Oromo and Amharic, the national language, and he has a passport and was ready to fly. We finished his testing and the group was soon complete. Because of the medical emergency, Dr. Rick flew with them and helped translate as they had their initial exams.

Stay tuned for more updates, and enjoy these remarkable photos!

International Life-Saving Surgery Program

Dear Friends and Supporters:

At year’s end, we’d like to report on our work, thank you, and ask for your continued Support.

Click here to view the full 2016 Annual Report.

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Warm greetings to you all from Addis Ababa! We’d like to report on our year, and ask
for your support.2016 has been game-changing. Our medical work runs in 3-year cycles; our project expired in June. While I stepped out, the project was reviewed and scrutinized by the Ethiopian Ministry of Health (MOH) and Charities Commission, and given superb reviews. As a sign of support, they renewed it – for an unprecedented 5 years!

2016 has been game-changing. Our medical work runs in 3-year cycles; our project expired in June. While I stepped out, the project was reviewed and scrutinized by the Ethiopian Ministry of Health (MOH) and Charities Commission, and given superb reviews. As a sign of support, they renewed it – for an unprecedented 5 years!

Our outpatient work has been at Yekatit 12 Hospital. The MOH asked us to move to St. Paul’s University Hospital system. This is a great opportunity to expand and train Ethiopians. Later this month, we’ll move to AaBET Hospital (Addis Ababa Burn Emergency Trauma Hospital). The Ethiopian government has determined that our spine center should be headquartered there. Ethiopia is under a “state of emergency,” which has made life more difficult. Medical teams canceled trips. But we feel safe, and life goes on.

Dr. Ted from Texas, Dr. Sarah from Kansas, Dr. Kamal from Chicago and Dr. Boachie from Ghana have each come, and we’ve done 54 surgeries in Ethiopia this year. In Ghana, we have done 31 surgeries. And at this writing, we have 5 patients in Ghana. Last week, I was in seclusion for 3 days, scrutinizing the records of 180 of our most challenging patients. We chose 22 patients to go to Ghana next week, with additional patients to depart in 2017.

And when I fly to America tomorrow night, I’m bringing with me twin 16-year-old boys named Markos and Tamrat Bogale, who will have spine surgery in Dallas by Dr. Ted Belanger.

We have gotten 121 new heart patients so far this year. We have not had time or funds to send a group to India for heart surgery this year, but hope to do that in early 2017.

[Continue by to the full 2016 Annual Report.]

From Paralyzed to Walking – a new life for Aliyah

9-year-old Aliyah first came to us, paralyzed, incontinent, and unable to feed herself, from her home, 500 miles south, in April. She lives in such a remote area, it requires a 1-day bus ride, followed by 4 hours by foot or donkey to reach to her village. Her dad is a farmer. She has 2 brothers and 2 sisters –  and her mom was about to deliver baby #6.

0Aliyah had already spent 23 days in hospital in Addis Ababa with a bit of improvement, when she first was carried into our office. But she was incontinent of urine and stool, and was still paralyzed.  She has signs of a skin condition called NF – neurofibromatosis, throughout her body. Perhaps a quarter of NF patients also have spinal deformities, and 5% of our spine patients have NF. Our NF patients are among our most difficult and complex. And Aliya she was among the worst of these – we categorize her as a “translocated gamma deformity,” which we have described in several severe patients.

Multiple physicians advised the family this was inoperable. But her dad heard about us, and came for a final opinion from Dr. Rick in the JDC Spine Program, the Saturday before Ethiopian Orthodox Easter.

On exam, Dr. Rick found she was hyper-reflexic, with bilateral upgoing toes and sustained clonus, all indicative of a great strain on her spinal cord. He determined that there was only 1 hope – trans-continental flight to FOCOS Hospital in Ghana, and months of traction to slowly realign her spine. A visiting doctor immediately pledged half the money. A matching fund gathered the rest.

Her dad obtained her passport. Normally, we’d consider sending her mom – who can better to take care of a paralyzed child? But her mom was about to deliver and was unable to fly.

Lemma, our great nurse, brought her to Accra, and helped her into her new surroundings. 4 holes were drilled into her skull, and she endured several months of traction, 23 hours a day. She then underwent spine surgery, which involved spinal fusion from T1-T7, instrumentation and placement of 3 rods.

After several weeks of  physical therapy, she returned home. Her dad met her at the airport, crying. When he last saw her, she was paralyzed, incontinent, and unable to feed herself. Now she was slowly and proudly walking down the hill to the parking lot unassisted!

Hundreds of people showed up in her village to greet her, and her dad slaughtered an ox in thanks. Even now, relatives come every weekend to visit and support her growing family. She is enrolled in school, and even plays a gentle game of volleyball.

Kemal, her dad, made a special trip to his mosque to thank the Almighty for saving he daughter. And he specifically asked me to thank everyone who donated to help save her.

When Aliya returned home, she met her new brother for the first time. His name? Tofik – one who brings great luck! Many thanks to all our donors, without your help we could not even think of helping Aliya.

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Bef – Welcome to America!

On February 16, 2013, a young man from Nazret came to see me in our JDC spine office at Yekatit 12 Hospital. He was referred by nuns. A star 9th-grade student, Bef had a droopy right eye. I took this very seriously and we did testing. His CT scan showed a huge mass behind the eye, measuring 5.5 x 4.2 cm. (2.1 x 1.6 inches).

dsc01744First step – a biopsy. My big fear was that this could be SNUC – sinonasal undifferentiated carcinoma, which has a very poor prognosis. Ethiopian physicians wouldn’t touch him, explaining that even a biopsy required a huge surgery. After a couple of days of searching, I located a Dr. Sandra, a professor from Minnesota. In a 10PM call, she said “I’m leaving tomorrow and am booked all day. Send him to me in the morning, fasting, and I’ll see what I can do.”

She opted for a minimal procedure through the nose, in her OPD, using local anesthesia. She carried the biopsy back to the States, and mailed it to the University of Rochester, which analyzes my samples for free. After 2 weeks of complex tests, pathologists emailed: he has “embryonal rhabdomyosarcoma of the orbit.” This is a complex tumor, but potentially treatable using several modalities.

Bef started chemotherapy in Addis Ababa. Then he needed radiation therapy. I contacted a radiation oncologist in Michigan who had provided free treatment for a patient of ours from Mother Teresa’s Mission with Hodgkin’s lymphoma. “Get him here, we’ll do the rest, no cost,” Jeff said.

On July 27, 2013, we flew together to Michigan. After 2 months of radiation,
Bef returned to Ethiopia and continued chemotherapy. I made a quick trip to India, at my own expense, to bring back Actinomycin D. After 14 cycles of chemotherapy, he was cancer-free.

His host family in Michigan sent him $50 a month, and he moved in with an aunt
in Addis and enrolled in a private school. He ranked #1 in his class. Later his aunt wanted privacy and gave him a week to move out. He called me asking for advice. “We will find you a bed,” I said. We arranged alternative housing, at no cost.

This summer, I was able to send him and Tilahun, a 12-year-old cancer survivor (Ewing’s sarcoma) with 1 leg, to Camp Good Days and Special Times in the finger lakes of upstate NY. We visited the University of Rochester so both boys could thank their pathologists. Without their precise diagnosis, we could not have treated them properly.

This summer, I was able to send him, and Tilahun, a 12-year-old cancer survivor (Ewing’s sarcoma) with 1 leg, to Camp Good Days and Special Times in the finger lakes of upstate NY. We visited the University of Rochester so both boys could thank their pathologists.Without their precise diagnosis, we could not have treated them properly.

We visited the University of Rochester so both boys could thank their pathologists.Without their precise diagnosis, we could not have treated them properly.

When Bef and Tilahun went to the Rochester airport to return to Ethiopia, who was ahead of him in the US Air line? President Seligman of University of Rochester. They had a warm conversation.

Last week Bef returned to Rochester, to attend high school at the Harley School.

One of Bef’s first things to do? Returning to the University of Rochester Pathology Department to deliver a pathology specimen from another Ethiopian patient his age with a bone tumor .

Our deep thanks to all who made this happen.

Ethiopian New Year was a few weeks ago (2009). And Jewish New Year was a few days ago (5777). A medieval rabbi, the Maharil of Germany (1365-1427) used to greet people this season and say:

“May he who suspends the earth in space, inscribe you for life, on this day of goodwill.”

I certainly can’t improve on that one!

Whatever calendar you are on, we wish strength and blessings to all for a great year.

– Dr. Rick Hodes

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