This article has been shared by Fredrick Beuchi, an epilepsy awareness activist and caregiver in Kenya.
My sister wondered why I had taken so long to visit them at home. Now that she knows how to operate a cell phone she would call to ask if am ok. It was mid-March, 2020 I had traveled to Nairobi city from the coastal town of Mombasa where I live with my family. I was preparing to host an event lighting up the tallest building in Kenya called The UAP-Old Mutual Tower in purple, to mark Epilepsy Purple Day, which happens on 26th March every year.
I was so excited about the event, it had received massive support and good will from the city government and media across the country being the first one of its kind. Three days to the event Kenya announced its first case of Covid-19 through a live TV coverage by the Minister of Health. The announcement came with an equal share of fear and panic to the people, it wasn’t long before all public events and gatherings were cancelled with immediate effect.
As it downed in me that the Purple Day event was also not going to happen, the government announced further measures and this time it was a total lockdown and restriction of movement in and out of the city. This meant that I was going to stay in Nairobi longer than I thought and it is what got my sister worried and concerned. As I tried to put myself together and explain to her what was happening, I was also negotiating with the city authorities to just let us light up the building purple for the media to broadcast without audience presence. My request was granted and on 26th March, 2020 we lit the Nairobi’s skyline purple for the support of People living with Epilepsy.
My passion for epilepsy care and awareness is inspired by my sister Mercy Kwekwe. Mercy is our youngest sister and she was diagnosed with epilepsy at the age of 2 years. In 2012, I quit my job in the shipping industry to help mum take care of our sister, being the first born in the family I had seen my mother struggling with taking care of Mercy over a condition we didn’t know much about. The community around us had started to be very judgmental on our sister’s condition, they believed that she had been bewitched or cursed. Mercy was having severe drop attacks after every twenty minutes. She had multiple injuries all over her body, one day the worst happened to her when she fell over a charcoal burner and got very serious burn wounds.
Currently Mercy is 14 years old and she has been seizure free for 4 years, thanks to the epilepsy specialist doctor who was touched by our resilience as a family to see our sister getting better. The journey of taking care of her completely changed my perspective on persons living with epilepsy and led to a full-time initiative of creating awareness. In order to still give the best care even in Covid times, we have initiated weekly radio talk shows in our community radio stations to give guidance and impact knowledge to parents and guardians. The 24 hour free toll line where people can call for any emergencies during this pandemic has also been of great help to patients and caregivers.
Furthermore, the door to door delivery services by pharmaceuticals to deliver anti-epileptic drugs has kept the supply regular without putting people at risk of being infected with the corona virus.
To make sure that Covid doesn’t stop our commitment to raise awareness about epilepsy, Mercy will be joining me for an expedition to climb Mt. Kilimanjaro in November to create awareness and support other children to access medication during these tough times across Africa. Beyond Covid-19 there is hope.