Meet Ferehiwot — from Polio and Scoliosis Patient — to Volunteer

Firehiwot still remembers the exact date she first came to our clinic—December 17, 2008. Similarly, she remembers exactly when she flew to Ghana for life-saving spine surgery (May 3, 2009) and when she started volunteering at our clinic (December 8, 2013).

SP Frehiwot Seyoum 4-2013

A razor sharp memory is just one of Firehiwot’s many strengths. Now 23, she is finishing her 3rdyear at Addis Ababa University; next year she will graduate with a degree in social work. She speaks fluent English and is learning Amharic Sign Language and Portuguese. This summer, she will begin piano lessons. Firehiwot also excels socially—in her free time she watches movies, reads, plays pool, dances and goes clubbing with her many good friends from college. Her favorite TV channel is MTV.

 

But life hasn’t always been so easy for Firehiwot. She developed both polio and scoliosis soon after she was born. Her family sought help at various hospitals in Addis Ababa, Ethiopia’s capital city and Firehiwot’s hometown, but none of the doctors she saw knew how to treat her worsening condition. She struggled with walking and serious back pain. Even sitting was painful, forcing Firehiwot to frequently change sitting positions at school.

In the midst of these health problems, Firehiwot’s mom died when she was 8, leaving her dad to raise Firehiwot and her younger brother singlehandedly. Her dad started managing a pool hall—to spend his days with people, rather than sitting at home depressed—and thankfully, he has always been able to support the family financially.

For the next several years, Firehiwot coped with her mom’s death, as her health continued to deteriorate. She took solace in the support of her good friends. Unlike many of our patients, she was rarely teased and was able to excel academically.

About 5 years ago, after another fruitless visit to a city hospital, one of our staff members recognized Firehiwot’s back problem. He suggested that she attend our clinic. A week later, Dr. Rick diagnosed her scoliosis and began planning to send her to Ghana for spine surgery.

SP Frehiwot Seyoum 4-20131

Firehiwot left for Ghana about 4 years ago, in May 2009. She enjoyed her time there and bonded with the 13 other patients and two staff members on the trip.  She even met the Ethiopian Ambassador to Ghana, who brought the patients injera, traditional Ethiopian sour bread, to tide them over from Ghanaian food (which Firehiwot was never very fond of). Firehiwot’s surgery was successful, and it took her about two weeks to recover. Soon after, she headed back home to start school, after spending most of her summer in Ghana.

Now Firehiwot is doing great. By her account, she has hardly had any back pain since her surgery. Despite her lingering walking problems—she mostly struggles with stairs and public transportation—Firehiwot brags that she is still able to dance. She even has plans to take up salsa dancing!

Firehiwot started volunteering with us over six months ago and is now an integral part of our staff. She helps with English translation, registering new patients and performing lung function tests on new spine patients. Most importantly, she helps counsel patients with serious social problems— orphans who have nowhere to live, patients  ostracized or abandoned by family members, and others who just want someone to talk to. She also speaks sign language with a few of our deaf patients and jokes that she’d practice her Portuguese if we had any patients who spoke the language. The summer, she is also volunteering as a social worker with a local NGO.

Firehiwot is driven by a desire to help people and give back. As a successful woman who has overcome two potentially devastating illnesses, she is a role model to our younger patients, many of whom cannot even imagine attending university. Firehiwot shares her experience with patients going abroad for surgery, easing their fears and explaining what to expect. But her story also has a broader significance: she is a former patient who is not only healthy, but who is using her new chance at life to contribute to society and help others.

Petros on the Plane

A recent email update sent to Dr. Hodes:
Hi Rick–
 
I asked  the flight attendants if they did anything special for a first-time flyer. They said no. After I told them about the surgery Petros was going to have, they said they’d do something creative. They gave him a rose, a card and a plastic chain necklace…hope you enjoy…thx, Bruce
 
Cheers,
Bruce
Petros flight

Petros: Now in Munich for Surgery to Remove Facial Tumor

Over a year ago, I was contacted about a young man in Harrar, Eastern Ethiopia with a huge facial mass growing for 11 years. It greatly diminished  eyesight in 1 eye, clogged one nostril, and caused a chronic, foul-smelling nasal discharge.

Petros is the youngest child in a family of seven. His dad was a security guard, but is now blind. Petros’ mother singlehandedly supports her family by selling injera, traditional Ethiopian sour bread. When not in school, Petros works as a daily laborer digging holes to supplement his mom’s meager income.

Petros lives with his parents and his 22-year-old brother, Yosef, in a cramped mud hut with no running water. The family takes water from a neighbor’s house, and takes bucket showers twice a week. They walk to a neighborhood latrine. At bedtime, Petros and his brother squeeze into the same small cotton mattress on the dirt floor. The family eats three meals a day consisting of injera and sauces.

Petros’ tumor started growing when he was seven. The deformity led to social problems: bullies teased Petros at school, some classmates avoided talking to or even looking at him. Passersby stared at him on the street and asked obnoxious questions. They looked at him and make the sign of the cross, asking Jesus to protect them from his condition. Petros reacted with depression and even feared leaving the house and going to school. Eventually, he taught himself to relax and to ignore the unwanted extra attention.

Petros’ impoverished family saved money to send him to local doctors without improvement. The family never gave up hope. Petros reluctantly turned to classmates and their families for financial help. They raised money to send him to Ethiopia’s capital, Addis Ababa.

Petros first travelled to Addis at the age of ten, consulting numerous doctors, receiving various types of unsuccessful treatments. Last year a family friend mentioned his problem to Dr. Rick. Dr. Glenn Isaacson, a visiting ENT specialist from Philadelphia  drained Petros’ sinus and did a biopsy. The biopsy, analyzed at University of  Rochester at no cost, showed an “ossified fibroma.” This non-cancerous mass would still kill Petros as it expands.

Despite growing disfigurement, Petros has been resilient. He has consistently ranked among the top 10 students and loves school—especially biology, chemistry, and physics. Now in ninth grade, he lost some years of school due to the necessity of travelling for medical appointments. He  spends free time studying and reading. He enjoys hanging out with Samson, his best friend of seven years. A practicing Protestant, Petros goes to church several times a week.

His favorite holiday is Enkutatash, Ethiopian New Year, which his family celebrates by singing songs and slaughtering a sheep. Since childhood, it has been one of the few times a year when his family ate meat.

With Rick’s intervention, Petros was accepted for surgery by Dr. Peter Cornelius and Michael Ehrenfeld at Ludwig Maximillion University in Munich. Rick believes they are the finest facial surgeons in the world – they have operated on about 10 of his patients, correcting huge, disfiguring facial tumors. Kind citizens of Munich rallied to support Petros, donating funds for his surgery and air ticket.

A surgery up to 20 hours is planned by a team of specialists: It is highly complicated: the mass will be removed, part of the skull will be removed and replaced with a prosthesis, the eyeballs are smaller than they should be due to pressure, and there is the possibility of post-surgical endocrine crisis.

Petros has been living in my home, sleeping on my living room couch as he studies English every day in preparation for his trip abroad. We have found him to be just great – nice, friendly, helpful, funny, and willing to go places despite having people stare at him and cross themselves as they see him. His mom and brother joined him for a few days before departure.

Petros hopes to finish high school, go to medical school to become an ophthalmologist. However, Petros is painfully aware that these dreams depend on his medical situation. Please keep him in your prayers!

Photos and story distributed with permission.

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