After two weeks of trying to pin him down, we finally meet with Fred Mboya Beuchi. From the first look, you would not know that he sits on the board of of National Epilepsy Coordination Board.
He is dressed in jeans and African print shirt with detailed neck line and speaks softly with a slight coastal accent as we settle to talk.
He has had roller coaster in his life: From unrelenting porn addiction to an ailing sister at home, the course of his life was blurry in his recent years.
Born and raised in Kenyan Southern Coast to Christian family Fredrick now stands as an epilepsy activist getting inspiration from his sister.
The son of a teacher, Fredrick’s confession at a local church in Mazeras was a new beginning.
He talks to us on his journey and how a dire situation was salvaged by his sister’s epilepsy.
How did you end up as an epilepsy activist?
It goes back to several years ago. You see I am a first born in a family of five, a brother and three sisters. Our last born sister Cate* is now 11, but two weeks after she was born, she was constantly crying like she was in pain and we couldn’t tell what the problem was. She was taken to the hospital and the doctor said that she had a boil growth in her thigh.
I’m sure he offered some solutions…
Yes, he said that she was going to be operated but added that she was too young to be injected with anaesthesia, so she had to undergo a painful medical procedure when she was just two weeks old.
Did her situation change after the surgery?
Well, two years later when she was supposed to be talking, walking she wasn’t doing it. By the time she was 4, she was experiencing convulsions. We thought it would go away. We were wrong. By the time she was five, she was falling down hurting herself. It was a difficult moment in our family.
How about your parents, it must have been hard….
They were really affected. They could not figure out what was wrong with their daughter. Friends started suggesting that she was showing symptoms of kifafa (epilepsy). So later she underwent diagnosis test and was given loads of medicine to take.
With the medicine did she improve?
I can tell you that between her fourth to the eighth birthday was a difficult period in our family.
Something else was happening in your life?
Yes, at the time, I had just cleared high school and had volunteered at a local approved school. But in my personal life, I was addicted to pornography.
How did that begin?
My first experience goes back to the time I was in class 8 when we went to local “video shop” after sneaking out. Mind you I grew up in Christian family. Later in high school, I interacted with the blue movies. I was hooked, I could simply not do without!
At the time you were a youth leader in the church?
That’s the irony, I would lead youth meetings, but at night I would get back to pornographic materials. You know it comes with masturbating.
That was your lowest point?
There’s a night I watched pornography for eight straight hours. After a little while, I would be in the bathroom, masturbate go back, feel guilty, blame myself then go back to the vice.
So you decided enough was enough?
It was after opening up about my situation in my local church during a youth meeting that I took about turn. Of course, there was the stigma, but I had decided.
So you were going through an addiction and your sister’s condition is not improving…
Yes. My sister's situation was of great concern to all of us.
You took action that changed the course of things…..
I decided to host a kid’s event with epilepsy awareness as the theme. I did not know any doctor, any specialist but I was determined. While I was watching TV I saw Jua Cali the rapper, who was an epilepsy ambassador that year saying that they would be having an epilepsy awareness open day in Nairobi’s Uhuru Park. He was with another lady whom I would later know as Grace Komen who works at National Epilepsy Coordination Committee. I told my mum that I had to travel to Nairobi with the hope of meeting an expert. By this time my sister's situation was dire.
So you made it to Nairobi?
Yes and I was lucky enough to meet an official from the coordination board. They told me I would get a specialist who would help. Incidentally, the doctor comes from Mombasa-Dr Chengo, whom I narrated my sister’s situation.
He promised that he would be coming to Mombasa the following week. He did come, she took my sister through different treatment and gave her medications for over six months.
Was it working this time?
Yes, yes her situation was beginning to change and intervals between her convulsions started to reduce. The passion to speak about epilepsy really took root because I had seen it first-hand.
What did you then decide?
By this time it had really taken much of my time, remember my porn addiction, I had forgotten all about it! I had been too engaged with awareness, helping out my sister, telling my story to schools and all these had taken my mind off my challenge.
Were you attached to an organization?
No, I was on my own and was helping this doctor with reports and incidences of epilepsy around my area. My first event on epilepsy was successful and I realised that I could actually be good with event management. By 2015 I was already asking how to register a company, which I successfully did.
I was already getting opportunities to start speaking in radio stations about epilepsy after hearing about my sister’s situation.
Your sister, her situation?
She has really improved. She has gone for about 3 years seizure free and after 7 years of not going back to school, she is now back.
Wow, that’s amazing?
Yeah, although at 12 she is supposed to be around class 6, right now she is still in lower class.
She will get there eventually….
Absolutely, it great thing. Even though it took a bit of time
So that gave you morale to pursue your epilepsy activism….
So I eventually decided to hold an annual kids gig with the theme of epilepsy awareness, especially in my home area. This doctor saw that I had really gone hard on my awareness efforts and I was asked to give a presentation in Nairobi on what I had been doing in Kwale.
That must have been great
Yes yes, and you know, three months after my presentation I was appointed to the board- One of the youngest.
The youngest member?
Yes to date. I took it as an opportunity to learn and grow and it interesting all this had come about because of searching for medical help for my sister
So your events now have grown into a mix of activities
I started something else. I started fashion show called Epilepsy Afro fashion fair
What does that involve?
Fashion designers stage a show, and I tell them to donate 20% of their proceeds towards epilepsy. We’ve had three editions.
What about this year?
We are bringing it to Nairobi and we are fine-tuning it for 24th March and a small team is helping me with it.
Wesley Kipng'enoh (@wess_kipp)
We will have part two of this conversation