Meet Francis, an epileptic teenager in Liberia

For Francis, a teenager from the village of Nyokolitahun in Liberia, October 5th is a very special day: It will be graduation day for the vocational skills program he has been attending in Kolba City, about 15 miles from his home. Now that the dry season is approaching, travel by foot or motorbike will be easier. He’s looking forward to seeing acquaintances and meeting newcomers.

There’s just one problem: Francis is overcome by a sense of impending despair as the question, “Will I fall tomorrow?" cycles continuously through his mind. He can’t get the fear out of his head.

In Liberia, the terms, ‘fall’, ‘fall down’ or ‘fall out’ all refer to seizures. Epilepsy, a neurological disorder characterized by repetitive seizures, is a non-communicable condition associated with abnormal electrical activity in the brain. When seizures are uncontrolled, epilepsy is disabling. Persons with seizure disorders may experience a warning or ‘aura’ prior to a convulsion, but often there’s no such warning.

One of the most alarming types of seizures is the generalized seizure, or tonic-clonic seizure, which renders a person unconscious, as bodily control is lost and muscles contract violently. Falls commonly occur with generalized seizures, and resultant injuries include lacerations, burns, concussions and fractures. Drowning can occur if a person is in or near water. Seizures can also be complicated by prolonged headaches which adversely affect daily routines. Inadequately controlled epilepsy is also associated with premature death.

Worldwide, approximately 50 million people of all ages live with epilepsy, and epidemiologists are now confirming what has been long suspected: Sub-Saharan Africa has the world’s highest prevalence of epilepsy. Perinatal trauma, inherited disorders, head trauma and infectious diseases, particularly those caused by parasites and bacteria, are some of the conditions associated with the onset of epilepsy.

Seizures can be mitigated through the use of anti-seizure medications. Regular dosing, usually on a daily basis, helps prevent seizures in most cases. However, in the wake of the country’s civil wars, national drug inventories have been insufficient to meet Liberians’ needs for essential medications. There’s also a shortage of medical professionals.

Epilepsy is often accompanied by anxiety and depression, which takes a further toll. Mental health professionals are few and far between in Liberia, and anti-depressants are not commonly available.

In the developing world, societal misconceptions, including the belief that seizures indicate that a person is ‘possessed’ or is to blame for convulsive disorders, often means that individuals with epilepsy are considered contagious and hence stigmatized, isolated and marginalized. For children and youth with epilepsy, this is deeply troubling. Kids want to fit in with peers, rather than stand out. For people with seizure disorders, societal exclusion and isolation further exacerbate anxiety and depression.

Education is adversely affected, as academic performance and school attendance decline. Students may require days to recover following a generalized seizure while prolonged headaches make studying difficult.

Around noon on graduation day, Francis is standing with his uncle, Morris, at the Restore Hope: Liberia (RHL) vocational education center when he developed a seizure and fell to the ground. Onlookers surrounded Francis, while his uncle knelt beside him. RHL nurse Gladys Zarbay was alerted, and went to Francis, placing him safely on his side as Morris explained how Francis ran out of his anti-seizure medication the previous month because of a stock-out at the hospital.

Gladys promptly checked with the hospital: Still no anticonvulsants. Ultimately, she was able to ​purchase Francis’s anti-seizure medication at a small roadside shop in Kolba City.

When Francis was assessed two weeks ago, he was not feeling well. He was depressed and only reluctantly communicative; he held his head between his hands. It had been a particularly difficult week for Francis, who also suffered a bout with malaria.

Currently, Francis is taking his anti-seizure medication.

This week, in November 2020, Francis is feeling better and regularly taking his anti-seizure medication. But, he’d like to feel well – well enough to imagine that wonderful things are in store for him tomorrow, next week and next year - without the dread of seizures.

​Francis, one of many orphans in Nyokolitahun, continues to try to cope with life’s challenges. And while he’s grateful for his grandfather and RHL, he longs for relief from seizures, anxiety and depression. He doesn’t want to succumb to despair. His prayer is to experience wellness, confidence, societal inclusion and the emboldened vision of wonderful tomorrows.
​

​What RHL is doing (and would like to do more of) to help persons with epilepsy:

• Provide public health education to reduce stigmatization
• Assure access to anti-seizure medications
• Assure access to mental health drugs and services when indicated
• Provide extracurricular tutoring
• Advocate for persons living with epilepsy and mental health disorders
• Advocate for safe pregnancies and deliveries to reduce perinatal neurologic trauma
• Advocate for prevention/control and treatment of parasitic diseases

How RESTORE HOPE: LIBERIA is responding...
We are one of the only humanitarian aid organizations remaining in rural Lofa county. We must respond to the health crisis that the current pandemic now presents in Liberia.
 
Here’s what RHL is doing:

• Continuing to pay all staff, despite suspension of some activities such as the afterschool tutoring program.
• Supporting our staff in practicing preventive measures while they continue critical work by making home visits to vulnerable children in the community.
• Increasing the amount of direct cash transfers from $10 per month to $20 per month per household.
• Setting up support to our peer-to-peer health counselors to provide prevention messaging to the community while practicing physical distancing.
• Making a distribution of books for children to have learning materials at home while out of school, at the same time providing children and caregivers with preventive messaging about staying safe during the pandemic.
• Raising funds to supply two hospitals, Kolahun District Hospital and the Foya-Borma Hospital, with essential medicine and supplies as they face a looming catastrophe.

​In the midst of uncertainty and loss, you CAN do something to ease the suffering. Please consider donating to provide hospitals in rural Liberia with basic medicine and supplies.

We are all witnessing what this pandemic can do to health systems of various capacities around the world.

Imagine the scale of mortality that could befall a country that has scant resources. These two hospitals support a population of over 170,000. THERE IS NOT ONE VENTILATOR, NOT ONE MASK, NOT ONE PAIR OF EXAM GLOVES IN STOCK. THE PHARMACY SHELVES ARE EMPTY. Even basic items are needed—soap, hand sanitizer, bleach and other cleaning supplies, and PPE (Personal Protective Equipment) to protect the lives of our hospital staff.

They are doing what they can: setting up handwashing stations around the hospital and putting in place some measures learned from the Ebola epidemic such as screening points and isolation units.

Without more support, the number of deaths will be astounding.​

Your donation will SAVE LIVES.

​Ms. Blama’s story is one of resilience, of finding hope.
 
Like most Liberians, she was just a child when the war broke out. During the war, in hopes of surviving, she fled into “the bush”, the untamed lands of Liberia’s tropical forest. During those 14 long years of an intensely brutal war, she bore children.
 
The very day she delivered triplets, she was raped repeatedly by rebel forces.
 
She was then captured by the rebels and held as a prisoner. She escaped once, but unsuccessfully. They “chopped” her, as she describes her own experience. She finally escaped into Sierra Leone becoming a refugee. She eventually made her way back to Liberia but remained living in the bush with her children. She was too traumatized to re-enter society.
 
When RESTORE HOPE learned of Ms. Blama, our team in Kolahun brought her into the community. With ongoing psychosocial counseling, Ms. Blama is finding a new way forward.
 
As she says, she can now “go amongst her friends”. 
 
With RESTORE HOPE’s intervention and ongoing support, she now counsels other women who’ve gone through such trauma.
 
Her children are attending school and she’s become a weaving instructor in the Women’s Weaving Cooperative, supported by RHL. We are proud to know her.
 
Your financial contribution will help others, like Ms. Blama, find a new way forward. Join our community, become part of Restore Hope’s family of donors, and give a most meaningful gift this season.

Children need to play. 
 
For children to reach their fullest physical, emotional and spiritual development, play is critical. Children who don’t play, don’t thrive. This is especially true for children who have suffered through war, natural disasters, epidemics, death and loss, and separation from loved ones. Even in survival, their lives have been forever changed.
 
There are no toys or games in places like Liberia, where the opportunities to play are often non-existent. But kids are amazingly inventive: A tightly wrapped ball of rags can become a soccer ball, a simple barrel hoop or old bike wheel, plus a stick, becomes a classic hoop-and-stick toy. And for some kids we see in Liberia, an empty tin can tied to a long piece of string becomes a favorite pull-toy. Imagination does the rest.

​And for kids like Manbu, a 10-year-old 5th grader, imagination knows no bounds.  The first thing you notice about Manbu is his drive to invent and create. Whenever we see him, he seems to have a new toy or other creation, made from found materials - recycled sticks and twigs, plastic bottles, string and wire, an old broken LED flashlight, taken apart and repurposed.  From what you or I would regard as junk or trash emerge a helicopter, a toy truck with electric lights, a bench and table for his mother, a solar-powered cooking stove.
 
Appropriately, Manbu’s favorite subjects at school are math and science. “I like to fix things,” he told us, “and I want to be an engineer.”  How did he learn to connect the batteries to the lights on his truck? “On my own,” he said matter-of-factly. 
 
So far, Manbu’s world does not extend beyond Kolahun. But he hopes one day to go away to college and become an engineer. And after that? “I want to come back to help my mom, brother, and sister, and also my community.”​

Perhaps Manbu will be one of those who get the lights back on in Kolahun, solarizes the wells and pump stations, and builds the new irrigation and flood control systems.  There are many bright, young minds like Manbu in Liberia, and poverty should not be a deterrence for them to reach their full potential.
 
Shyly, near the end of our interview with Manbu, he wondered aloud if RESTORE HOPE: LIBERIA might help him go to college one day.​

​60% of Liberians are illiterate. Twenty years of civil war and the worst Ebola epidemic in history have devastated Liberia's school system. Most young people cannot read or write at their grade level, if at all, and few Liberian instructors have the skills to effectively teach literacy. Disadvantaged children-orphaned, disabled, chronically ill-are more likely to escape poverty if they are skilled and educated.

​Training after-school tutors in phonics-based literacy will dramatically improve a District's entire education system by bringing expert resources into the community. Not only will 100 children in various schools directly benefit from literacy instruction, trained tutors will go on to lead a Training of Trainers with teachers across the District, sharing their newly acquired knowledge with instructors within the schools. For the children, it will be life-changing.

Construction of the Vocational Education & Training (VET) center is 99% complete! The final step is the installation of water and sanitation facilities, for which we are currently comparing bids from local companies. We anticipate this will be completed by the summer’s end. 
 
Our office, library, and tutoring classes will be moving into the building in the coming months. The VET will also house the Women’s Weaving Cooperative. The weavers can now set up their looms under cover, just as the rainy season begins.
 
The community is excited about their new space…and so are we! Thank you to everyone who donated to make this happen. In particular, we want to thank the people of the German Democratic Republic who, through a grant from the German Embassy in Monrovia, made construction of the VET possible. Vielen danken! 

May 2018
Inside the sweltering rental car, Juliana sits wedged between her parents in the rear seat. The vehicle zigs and zags along the bumpy road, trying to avoid the large pot holes. No one speaks. We pass small villages of one-room, mud-brick houses with warped, rusty metal roofs. The landscape alternates between remnants of rainforest, parcels of land cleared for cultivation, and tidy groves of rubber trees and African oil palms.

Juliana is thirteen years old. Her stern gaze is fixed on the road ahead. Her facial expression is blank. There is not the hint of a smile.

What is she thinking?  What is she feeling?

Juliana is at the heart of this 45-minute trip from Kolahun District to Voinjama: She is deaf. 

In recent months, both James Kpangbai, RHL’s Field Coordinator, and Margret Gieraths-Nimene, RHL’s then Country Program Director, have been exploring suitable schooling options for Juliana. In Liberia, schools for the deaf are rare. Although RHL has supplied Juliana and her family with sign language books and although she’s enrolled in a conventional local school, it’s clear she needs more resources. 

A nun, Sister Ann Kelly, had recently told James about a new school for the deaf in Voinjama. Today we’re going with Juliana and her parents to visit this school.

In Voinjama, we stop to get final directions to the school. I catch a glimpse of Juliana; her face still emotionless. Is she nervous? Scared?  Apprehensive? Excited? Unsure? Eager? Reluctant?

March 2019
It’s been seven months since Juliana enrolled at the Voinjama Academy for the Deaf. James in Kolahun has called to tell me he’s sent photos of some of RHL’s beneficiaries, including Juliana.

I open the file of photos and read the first caption: “Juliana and her school mates.” She has friends, she is connected to the world through relationships. And she’s smiling! A sign of HOPE.  

​It is with great sadness that we report the death of our friend and brother, Francis Kanneh, on January 31, 2019. Francis was a teacher who for the past several years served as RESTORE HOPE: LIBERIA's head tutor and head of our after-school tutoring and adult literacy programs. In spite of increasing health challenges, Francis was ever present, always with an easy smile, always helpful no matter the task. He was courageous and dedicated and was beloved by the children, the RHL families, and his friends and colleagues.
 
Francis was originally from the Vahun District of Liberia; he grew up and attended primary and secondary school in Kailahun, Sierra Leone. He received his initial teachers’ certificate from Bonumbu Teacher’s College in Sierra Leone. Later, after two years at the International Rescue Committee’s Refugee School in Kountaya, Guinea, during the Liberian Civil War, he earned a Diploma for teaching the Integrated Course of Study based on the Secondary School Curricula for Liberia & Sierra Leone.
 
After the war, Francis returned to Kailahun where he taught at St. Joseph’s Primary School for 7 years, and then for another 3 years at the Musu Kanneh Public School in Kolba City, Kolahun, Lofa County, Liberia.
 
Poor health forced Francis into an early “retirement” from public school teaching but did not slow him down much. He joined RESTORE HOPE: LIBERIA in 2013 and continued his teaching and meeting with our many students, parents and caregivers, and many area teachers and school principals. His responsibilities as our “Principal” included assessing student needs and coordinating our tutorial curriculum with the curriculum in more than a dozen different schools in the Kolahun District.
 
RHL and the Kolahun community have lost a friend and dedicated teacher. But we are heartened that Francis' spirit and determination live on in the members of the communities we serve who will take this work forward. His memory prompts us all to rededicate our efforts.
 
To all our friends and colleagues: you may not have known Francis, but when you see his work, see him in action among the vulnerable kids and families of Kolahun, in rural Lofa County, Liberia, you will recognize the face of dedication and service, compassion and resilience, a man who was gentle yet strong and determined. And you'll see the work of recovery and development based on a holistic, community-centered, grassroots model that has emerged in the aftermath of war and disease.
 
We hope you’ll enjoy this short video vignette of Francis' work and time with RHL in Kolahun.