In 2013, Fredrick Beuchi Mboya, 29, felt compelled to be an activist towards a better understanding of epilepsy. Last month, he walked from Nairobi to Mombasa over 12 days as part of his volunteer work to raise awareness about the disease. He tells Gardy Chacha his story
Why walk for epilepsy?
The walk is one among many activities I have done to raise awareness about the disease. My sister, the last born in our family, suffered seizures from the age of two – in 2010. Where I come from, epilepsy is strongly associated with witchcraft and powers of darkness. It is believed that when a child suffers from debilitating conditions like epilepsy, his or her family have given her up to powers of darkness in return for wealth. And this is exactly what villagers thought was happening with us.
My family as well had very little understanding of the disease. We believed that epilepsy was inherited through genetics. I saw my sister suffer. I felt that I needed to do more about the disease and so I began volunteering to raise awareness about the disease.
Did your sister ever get the right medical attention?
Yes she did. But it was much later in 2013 as she turned 6. I had travelled to Nairobi from Mombasa to attend Epilepsy Open Day organised by the National Epilepsy Coordination Committee (NECC). I wanted to know more about the disease. Shortly after that event, she was properly diagnosed and put under medication.
What were your starting and ending points for the walk?
I was flagged off at Nairobi West Hospital by the secretary of NECC on July 31. The end point was Mombasa County Assembly offices where I presented the county minister of health with two flags written ‘Angaza Kifafa’.
Why end at the county assembly?
Every year, the NECC holds road show caravans in five counties to disseminate information about the disease. When I came up with the idea to walk from Nairobi to Mombasa, it was suggested that I tie it to this year’s road shows — which were happening in Mombasa and Kwale between August 15 and 16. I was to walk for 12 to 13 days. I arrived in Mombasa on August 13 — just in time for the road shows. I also gave a presentation to Kwale and Mombasa counties on the importance of setting up a department for non-communicable diseases where epilepsy needs would be addressed too.
Had your sister not suffered from epilepsy do you think you would have ended up raising awareness about it?
It is exactly for that reason that I do all I can to raise awareness about epilepsy. All of us are ignorant about something. My family was ignorant about epilepsy. Human beings rarely give something a hard thought until it strikes closer home. My work is so that other people do not have to wait until a family member suffers a seizure for them to be human about it.
Career wise what are you doing now?
I intern as a pastor with the Methodist Church along Lang’ata Road here in Nairobi. I am also a board member at NECC.
A pastor? Did you study for that?
Yes. I studied Theology at St Pauls University in Mombasa.
You did not think that probably you could have prayed and left it at that instead of doing walks?
That is not how it works. Back in 2011, 2012 or thereabouts, before my sister was properly diagnosed, we still fellowshipped with the Methodist Church in the village. The church’s point of view regarding my sister was that she was possessed by demons. They would ask that we go for prayers. But my sister continued experiencing seizures. In the end, the church sort of recoiled away from us and the narrative went around that the problem was within our family. That was a painful experience. It is part of the reason I felt convicted that I needed to do epilepsy awareness campaigns.
For the 12 days you walked, did you change clothes? Where did you sleep?
The distance from Nairobi to Mombasa is approximately 482Km. You can’t walk such a distance non-stop. My plan was to walk 40– 45km every day with the exception of a section measuring about 92km straddling Tsavo East and Tsavo West national parks to avoid possible attacks by wild animals. The Kenya Red Cross helped ferry me through this section.
I had designated every day’s walk to end at a town centre. I would start off at 7am and end by 5pm. I would look for a place to sleep. I had three T-shirts written ‘Angaza Kifafa’. I would wash the T-shirt I had worn for the day and change into a clean one. It was important that I don’t carry a lot of things because it would grow heavier and heavier with every kilometre.
How did you deal with rain?
Luckily, it never rained – at least wherever I was and at that moment. I had to contend with the scorching sun. To keep myself hydrated, I drank a lot of fluids. By the time I was arriving in Mombasa, my skin was cracking: I couldn’t do much about the sun’s rays.
Did your sister know that you were walking for her?
Yes. She is 12 now. She was very happy that she mobilised villagers to meet and cheer me on at Mazeras town [my family hails from the part of Mazeras that is in Kwale county] on my way to Mombasa.
How is she doing now?
She has improved to the point that she can attend school. Just before she began taking the right medication, she had seizures every 20 minutes. As time went by, the frequency of the seizures went down to one a day then one every three days then one a week. Today it is three years since she last had a seizure. She is still on medication though.