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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Selam: A mother’s prayers are answered

DSC00783As a physician caring for some of the most deformed spine patients on the planet, we don’t always get the chance to give good news.  In fact, one of the most difficult things our team did last year was to meet Selam’s mother.

We knew that 16-year old Selam was a high-risk patient. Without surgery, she would have become paralyzed, for sure.

Let me back up for a moment. Over a year ago, Selam came to us from her home in Ayer Tena on the outskirts of Addis Ababa. As a 4 year old, her mom was giving her a bath and noticed that her back had a bulge. This continued to get progressively worse. She went to many holy water sites, hoping the healing powers of the holy water would cure her and straighten her spine. No help. She had multiple visits to Zewditu Hospital’s neurosurgery department. Doctors there contemplated operating on her, but her mom would not approve. Her mom went to church every day to pray for her daughter. Selam continued to get worse.

Selam continued school without missing a day. But she was teased about her back, and became increasingly self-conscious. She did not get together with friends, she simply went to school and returned directly home.

When she turned 13, her father died of heart disease. This put great stress on the family.  Selam became increasingly self-conscious, and stayed inside.

But her life changed. Her mom was in a taxi, and 2 women were talking about a patient who had successful spine surgery – in Ghana. Her mom learned that Dr. Rick was the doctor – and he  practices nearby. She brought Selam to our clinic the very next day.

We realized Selam was a critical patient – Her spinal angle was 205 degrees! How is that possible? Her spine is shaped like an alpha! Without dangerous surgery, she was sure to become paralyzed. She was evaluated by Dr. Boachie – he ranked her “1+” – our most urgent rating.

We sat with her and her family and explained the potential benefits – and potential risks. The real risks were paralysis, incontinence … and even death. The family said a prayer, and signed permission. We sent her to Ghana, where she went into traction for 4 months.  She improved, and her spinal deformity improved.

But a terrible situation developed – she became traction-dependent! When she slipped out of her traction apparatus, she would become semi-paralyzed! We had never had this happen before. We found no reports of this in the medical literature. An attempt to place her on the operating table without neurologic compromise was not successful.

Dr. Boachie phoned from Ghana, to discuss this in detail. “Rick,” he said, “her family must be informed. They must know that she’s at great risk no matter what we do.

There is a very high risk of paralysis. Her mom must be informed, and her mom must sign permission again –  under these circumstances. ” We asked her mom to come in, along with a translator for her native Gurage language. We explained the predicament – Selam can’t stay in traction forever. If she stops traction, she is likely to become paralyzed. If she gets surgery, there’s also a significant chance of paralysis.

At first her mom was against surgery. She wanted Selam to simply return home to Ethiopia, immediately.

“Now she can move,” she said, “who knows about later?” The decision had to be hers, not ours.  We phoned Selam in traction in Ghana, and they had a long, private talk.

Her mom returned 20 minutes later: “She needs the surgery,” her mom said, “I’ll sign.” We drafted a document in 2 languages which we read to her mom. Her  mom – illiterate – tearfully signed with her thumbprint and a prayerThen her mom spent several full days in church praying for Selam, asking God “for 1 big favor.”

In late 2015, Selam underwent surgery in Ghana, while still in traction.  She had spinal fusion from T1-L1, and removal of 2 bones – T7 and T8. She had thoracoplasty and local bone graft, and a mesh cage put in.  She had loss of some neurologic signals during surgery.

But she survived, with some neurologic deficit:  after surgery, she needed knee braces and a walker. Selam was determined to walk on her own, and practiced physical therapy for hours a day with amazing determination.

A few months ago, she flew back from Ghana with 10 others. She tearfully embraced her mom at the airport, and proudly and slowly walked on her own with a walker. She has continued to get better.

We phoned her this week, and she said “I don’t have words to explain how happy I am. Sorry, I have to go, I am out with my friends now and they are waiting for me.”

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Meet Natnael, miracle boy!

DSC08256Natnael, 18, hails from a family of 7 in Addis Ababa, Ethiopia. He is the youngest of his four siblings, 1 sister and 3 brothers. They live in a mud house in a crowded district in Addis Ababa known as Hanna Mariam.

Natnael lived the first four years of his life as a seemingly healthy child. His life changed forever one afternoon in the front yard of his family’s small house. While his mother was giving him a bath in a large bucket, she noticed a bump on one side of his back. She thought nothing of it for a long time and let it be. After a year, the issue could no longer be ignored – the bump had grown a tremendous amount and turned into a hump.

This prompted his parents to take Natnael to a hospital. Given their poor financial situation, they decided to settle on an affordable option; the huge government teaching hospital known as Back Lion Hospital in downtown Addis Ababa. The family visited this hospital countless times over the next three years, enduring hours of waiting before being seen by duty doctors and their supervisors. Between the ages of 5 and 8, Natnael and his family were told that his problem was too severe, and that he could not be helped in Ethiopia. He was told there was no treatment anywhere in the world!

His parents were quietly advised to cherish the remaining moments of Nati’s life. Doctors predicted that this child with a deformed back was also predisposed to developing pneumonia and tuberculosis, and had only months or a few years left to live. This was the only advice that Natnael’s family received from this hospital.

Desperate and out of options, Natnael spent the next 8 years of his life seeking out faith healing. Accompanied by members of his family, Natnael visited countless churches and holy water sites, where he was subjected to multiple prayers and baptisms by holy water. This gave them some hope, but Nati’s deformity continued to progress. His family
ran out of options.He weighed 70 pounds, and had a BMI of 12.

During this daunting time, his mother described Natnael as an incredibly optimistic child. Natnael did not miss school or many activities during his childhood. He attended all grades of public school regularly and he was able to make genuine friends
who were able to look past his condition.

However, being the bright child that he was, Natnael still felt the burden of his deformity in the form of the watchful eyes of the average passerby. During their many trips seeking a solution, he felt the people in the streets staring at him at him and shaking their head in sympathy. They would cross-themselves, a way of saying “May God keep this from happening to me.” This caused him to become very self-conscious.

It seemed as though he would spend the rest of his life this way, however, fate had another plan for this boy. One day, when his mother was running errands, she met a woman from Debre Berhan, north of Addis Ababa. During their short conversation, the woman spoke about an American doctor in Addis Ababa who saved the life of children with spinal deformities.

To the mother, this was just another word of mouth suggestion by another sympathetic person. However, being desperate, she chose to look into it, not knowing that this would be the opportunity she has been searching for, for years, to save her son’s life.

She first came to our clinic on March 14, 2015. Rick diagnosed severe idiopathic scoliosis, with an estimated angle of 200 degrees deformity from front to back (AP), 160 degrees on the side (laterally), compounded by a 48 degree ATR (angle of trunk rotation, the angle between the 2 sides of the back). It was one of the worst spines he had ever seen. He wrote “BFD” on the record (New York English for “big deal”). The deformity caused Nati to lose 71% of his lung function. His entire “FVC” (forced vital capacity, the total amount of air he could breathe out) was .91 Liters, about 3 cans of Coke! At 8000 feet above sea level! Dr. Boachie ranked Nati a 1+, our most urgent rating.

Another “chance meeting” would seal Nati’s fate. He was in clinic with us on Oct 30, 2015 when a delegation from the Max and Marian Farash Foundation of Rochester, NY visited. Dr. Rick mentioned “boy this kid needs surgery, I wish I had funding.” Immediately, the Farash trustees said “You have the money now, do what he needs.”

Nati travelled to FOCOS Hospital in Ghana less than a month later. After evaluation he was put into 4 months of long-term halo traction. On May 10, he underwent 6 hours of surgery, still in traction, led by Dr. Boachie. Specifically, he underwent posterior spinal fusion from T2-L4, Smith- Petersen osteotomies, thoracoplasties, concave ribs osteotomies, discectomies and bone grafts. His post-surgical course was complicated by low blood pressure, but he pulled through and is doing well.

Nati returned to Ethiopia last week, and will spend the summer recovering, then restart school. His goal: “to become an engineer.” With 4 rods and 18 screws in place, several inches taller and 26 pounds heavier, we’re sure he’ll make it!

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Aliyah Update: She’s Walking!

Aliyah is still in traction (an apparatus used to prepare her spine for surgery) but is able to walk with assistance!!!

– Dr. Hodes

Latest news about Aliyah + Matching grant still available

Our nurse Lemma personally brought Aliyah to FOCOS Hospital in Accra, Ghana early this month. (Read her story here.)

In addition to her z-shaped spinal deformity and NF (neurofibromatosis), she was also found to have Cor tritriatum – an extra heart atrium!

She has been in traction for over 2 weeks now. She is stable and doing well.

We’re hopeful that she will start to improve.

She is not fully funded, and our matching grant is still in place. We need your help– please donate today!

Thanks so much for your help,

Dr. Rick and the JDC-Ethiopia spine team

The JDC is a 501(c)3 organization, and all donations are tax-deductible.

New emergency appeal – with matching grant: Please – help us save Aliya’s life!

URGENT: We need raise $20,000 right away to save a young girl named Aliyah from becoming paralyzed. A wonderful donor is matching all donations up to $10,000. Please help us save Aliyah– donate today.


Aliyah first came to us in April as a paralyzed 9 year old girl. She returned a couple of weeks ago on the Saturday before Ethiopian Orthodox Easter. We usually close that day so our staff can prepare for the holiday. It’s a good thing we stayed open. While most of our Christian patients stayed home, we had plenty of Moslem patients who came in. Last patient of the day? Aliyah and both parents.

IMG_6422They live in the Silte region, 3 ½ hours away by car, followed by a 4 hour walk. When Aliyah became paralyzed months ago, both parents moved to Addis Ababa and rented a room in Akaki, outside Addis Ababa. Their rent? $5 per month. Her mom is 9 months pregnant at this moment, due any day. But both parents were at her side, absolutely dedicated to her health.

Aliyah has a genetic condition called neurofibromatosis – NF for short. About 4% of our spine patients have NF. She became paralyzed about 6 months ago. She was admitted to the university hospital for 3 weeks and got somewhat better. On her initial exam with us in April, she had signs of upper spinal cord compression – her big toes pointed up on Babinsky test. And she had super-active reflexes.

In recent weeks, she has had some return of feeling in he body and regained the ability to control her urine. I drove her myself to scanning center an hour before it closed for Easter. She is in a super-precarious situation. Her spine is dangerously unstable – it has a Z-shaped deformity, which we sometimes see in our NF patients. Even though she is a bit better, Dr. Boachie advised:

“Rick, this girl may be OK, but not for long. Her only chance of improving is immediate traction and later stabilization. But no guarantees. It is almost a dislocated spine.”

When I told a visiting physician who saw her with me that we’ll need at least $20,000 to try to save her, he said: “Rick – I’m in Ethiopia, and now God has put us together. I’ll match her donations – dollar-for-dollar – up to $10,000. Tell your donors.”

So now I am asking you all to generously donate $10,000 for her treatment in Ghana. As Dr. Boachie said, there’s no guarantee of success. But without our efforts, she will become paralyzed.

With gratitude,

Dr. Rick

story and photos used with full permission

The JDC is a 501(c)3 organization, and all donations are tax-deductible.

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deformed spine x-rays

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The JDC is a 501(c)3 organization, and all donations are tax-deductible.