Weblog

WHAT AND HOW: What was the aim of the project and has this been achieved? How many people have been supported (directly/indirectly)?

The aim of the project is to give epilepsy education and offer coaching to the patients with epilepsy at Kenyatta National hospital to give the right information and to guide them to live beyond their condition and achieve their dream and having a normal life.

We have the trainings on every Monday and we get to reach directly about 10 patients per session and we are able to do 3 sessions per day. Per month we reach (4 times 30)120 people. Per year we reach 1440 people. Indirectly these patients spread the information they have received to their friends and family members.   

 TIPS AND TRICKS: What went well and/or better than expected? Which aspects were more challenging/turned out different than expected? What aspect would you take into account in a next project? (This is especially helpful to share with other project developers).  

Most people have been having wrong perception on the condition and this maximizing high level of stigmatization among people with the condition. The project has helped in giving of trainings and in the awareness creation to bring epilepsy out of the shadows.

We believe from the initiative people will get to understand and accept persons living the condition the way they are and minimize the level of discrimination. Now we plan to further the collaboration with Kenyatta National Hospital and to move to other clinics as well to reach more people.                                                                                                                

 CHANGE:  What is the most significant change for a person out of the target group and/or what aspect in her/his life has been changed by the project? Literally ask that person: What, in your eyes, has been the biggest change in your life through this project?

The most significant change: we met one guy who has been living with epilepsy and left school because people thought that he would infect the condition to others. This has resulted him having a low self esteem to interact with others.

Through our guidance he is now are able to have the right medication and his seizures are controlled and is transferred to another school. Now he lives a life in which he uses his true full potential and strives hard to achieve his goals in life.

 FINANCIALLY: On what exactly has the money received through the 1%CLUB been spend? Have there been any changes from in the budget plan? If yes, please explain what exactly changed and why?

The received funding has been spent exactly the way we had planned it. However, we had to use more leaflets and booklets. We spent more money on this with the support of other sponsors. Secondly, the guidance was also more expensive, which we also knew to finance through other private donations that we have received.

 WHAT’S NEXT: How are things going to continue on the project location? What is the follow-up of the project?

Kenyatta National Hospital has evaluated the outcomes of our coaching, and has decided it is worth furthering the collaboration. Therefore we will keep on coaching their patients. There is one challenge; it is difficult to get funding for coaching, as the coaching needs financial support every year. People rather sponsor activities which become financially independent. We want to achieve this financial independence through our Movers Cyber. This will take some time, as we also need to finance the training of the peer educators and the epilepsy trainings throughout the country, but we have faith it will finally work out.

Youth with epilepsy should not be ashamed of who you are.Nothing can hold you back Unless, you let it. You cannot move forward in life unless you take chances find your strengths and build on them each day. Share them with others, learn from the people around you and always be proud of who you are. You are a special person with so much to give, so many people will learn from you if you let them and also you learn from them.

It was a particular Sunday where I left my father to go to church without me. Today I would meet my Dutch buddies for the first time after they had arrived at the Kenyatta International Airport. This was a moment I had been waiting for all these months. Excited about the idea I nervously searched for a bus to take me to the place where I would meet them; at the entrance of the KICC, one of the highest towers in Nairobi. This would give them a nice first view of the city. The thought of meeting with Europeans made me nervous; me thinking to be less worthy than them. I expected not to be accepted as an equal since I come from a poorer background. While I reached the tower, I looked around to find out that I was the first one to arrive. My nerves are replaced with curiosity when I finally get them in my eyes. How would it be to live with epilepsy in the Netherlands? Is it so different? Or is it actually all the same no matter where you come from? I look at them, hear Dutch talks and wonder why I hadn’t even learnt a bit of this language. It’s a relief to me if I find out that most of them were doing all they could to express themselves in English. While we went to the top of the building Jochem quickly makes the first moves of sharing experiences. This surprised me big; considering we had just met. I had never expected people to be so open and to share their personal experiences so easily. A great feeling went through me; to know they accept me the way I am. Jochem told me how he fell of the stairs whereby brain damage caused his epilepsy, and showed me the scar on his head. Although I had lived in Nairobi my whole life, I had never been on top of the KICC building and felt like a tourist when we looked at the enormous city housing 3 million people. Hungry after all these new impressions we went for lunch at a luxury restaurant at the Koinange Street. Not used of going out to places like these, I was given a menu which made me stare in confusion. How could I choose? I never had been given the choice which meal I would want to eat! Karyn looked at me and recognized my uncomfortable situation. “Relax Mose, just choose something you’d like to eat; it’s your lucky day!” How could I choose while still being so excited of being with a group of new friends?! Soon I realized I had no any reason to feel less, the Dutch youth had embraced me as one of them. And later I would find out we have more similarities than differences. During their first visit at our centre I was greatly touched when the guys revealed their emotions, whereas I, as a Kenyan guy had learnt never to share even a bit of it. One of the guys started to reveal how his epilepsy could make him uncontrollable, that he could beat people without wanting to do it. One of them even shares his hardships of epilepsy with tears in his eyes. This sounded so familiar and I felt exactly what he shared with us. But would I ever be able to show my emotions like them?

The next adventure was our visit to Murang’a accompanied with a crowd of journalists where I got the chance to teach the community about epilepsy in my mother tongue Kikuyu. Coincidentally while we explained about the first aid, one of the Dutch youth got a seizure. All camera men ran in her direction to record the event which would be shown on television the same evening. While my father had stayed home and listened to Kameme FM he heard the famed Anthony Kahiga reporting about our event. This would just be one of the many exciting adventures of these two weeks with the Dutch youth with epilepsy.

Soon thereafter we had the chance to meet with the Permanent Secretary of the Ministry of Youth Affairs and Sports. I can tell you that my self-esteem clearly increased; full of pride I sat in a luxury chair like a boss with mineral water on my table looking at the PS. And it was clear I was not the only one who proudly attended the meeting. Moses Onyango, one of our youth with epilepsy took all his time to come up with his demands to the government. Youth with epilepsy had to be paid more attention to; why had he stayed home with epilepsy for all these years with the wrong treatment prescribed by witchdoctors and without proper education? It was time the Government would offer better chances to people like us.

We would be even more convinced of his views and demands when we visited the Kenyatta National Hospital. Here we met with Dr. Ndege who shared with us the epilepsy care offered. He explained how the EEG was out of order for over a long period of time, and he didn’t really know when it would work again. How could this happen in a hospital known by everyone as the national hospital in Kenya? Soon the youth from the Netherlands would be exposed to more situations where the required means are not available. To our planned visit to Chebitoik far interior the Dutch youth would get to see life with the very basic means; no water tap, no electricity, no phone, but real life. Due to the drought of the last months the land was without crops, without any liveliness. We were brought to Nyumba ya Karyn, the house named after Karyn who had started the movement of the youth with epilepsy. With an official ceremony she was honored with a crown of flowers out of appreciation for her efforts. Delicious meals of the Kalenjins (one of the tribes in Kenya) were served while we heard the lively beats of their traditional music outside the house where the whole village was watching. Exhausted of new impressions the youth were staring at the event, when I see Neville, one of the Dutch youth sitting around the children who all want to touch and look at his white skin. We all decide to go to bed to gain energy for the next adventurous day where we would meet many more people. Early in the morning after a heavy breakfast and prayers we were accompanied by Pastor Korogoren and Pastor Charles to give our epilepsy education at the market in Chebunyo. Even the Kaplong Hospital was invited to be part of it, and to take medical history and describe anti-epileptic drugs to the people who seriously needed it. Never expected it to be such a big day when we found that even over more than one thousand people had come to see what was going on. Who were these wazungu? These whites, what have they come to do at this market? People had walked from a far distance to be at the usual market day and unexpectedly got to learn about the real facts of epilepsy, which was rather perceived as a worm in the brains.

As a blessing for the farmers but an inconvenience for our activities the rain started falling down. Fortunately it didn’t stop people from attending the event. While Karyn was dragged on stage to dance the Kalenjin beats I take off to hide in their house, to gain energy for our next tour to Naivasha. Here I would have my first experience of sleeping in a tent. Not just a tent, but one nearby the roaring Hippo’s from Lake Naivasha. I had never felt how it is to be a tourist, but now I absolutely felt like one while I learnt more about life with epilepsy in the Netherlands during my chats with our honorable guests. Regrettably I start to realize that the day of their departure gets nearer. While we take our last breakfast together, Loes tells me how she longs to stay with us. She doesn’t want to go back to the Netherlands at all. And I feel the same; I wish they could stay longer. Contact through Facebook keeps us in touch with them and gives us inspiration to organize more Movers Tours. This adventure is just the beginning of a bigger event. We get in touch with people from America and from Canada, people from Australia and even Malawi who are infected with the longing to see the true Kenya life. We get to understand their desire to get in touch with Kenyan people with epilepsy and to contribute to stop the stigma. It’s not just a fantasy; it’s a dream we must put in action. It’s high time we start sharing our deep rooted cultures and beliefs with people all over the world, together we can make a difference!

This week Me and Barbra at KNH (Kenyatta National Hospital) had nice moment with doctors nurses patients/clients, gave epilepsy education, coaching and counseling session. we're analyzing the questionaires from the patients for how they have benefited from the Monday's sessions for the last six months which will enable us to work efficiently and effectively. After offering the epilepsy trainings, coachig and couseling sessions at KNH and the KAWE (Kenya Association Welfare of persons with Epilepsy) clinics Mathare, Riruta and Karen sessions, most patients are acknowledging, understanding the facts about epilepsy hence having the acceptance and living beyond their condition:- therefore encouranging us to keep up to bringing epilepsy out of the shadows for people to get right information and understanding about epilepsy. Also planning to carry out epilepsy trainings to the staff in KNH community for more peple to be enlighted and combating the misconception about the condition!!!

My usual early wake up for my dad's service brought me more adventure than expected. In Githurai together with two hundred people we’re attending the service of Paster Njenga, my dad. While the people were listening to his prayers the most unexpected happened. We see a child falling and jerking while the mother burst in tears, confused and pleading for help. The usher of the church runs to the child, takes him out to the shade while the jerking continues. This is clear to me; this looks like epilepsy. People start shouting; “these are demons!” Their prayers continue while my father goes out with the other leaders who pray for the kid to cast out the demons which would want to disturb our service. While they block my way and take away a chance to give the first aid, my father looks at me with a smile. Once the boy has fallen in a deep sleep the deacon says how they have strong faith in God to cast away the evil spirits. Knowing that I can give the right help, my father goes back to further the service. Besides me the mother is crying and seems to feel embarrassed. I introduce myself and ask her if they had experienced this before. The mother reveals that half a year ago the kid started falling down. In the first month the kid fell once. In the proceeding months the number of seizures increased to three times a month, and lately even three times a day. When I ask her if she had taken him to any hospital, she explains she took him to Kenyatta National Hospital where they didn’t find any problem; medical tests didn’t show any difference in the brain. This situation reminds me of my own experience. I got epilepsy when I was twelve years old and we seriously thought I was demon possessed. Out of embarrassment my dad the pastor wanted us to keep it a secret. I was so fortunate that Mr. Kamau, my teacher from primary school recognized epilepsy in my seizures, and that he referred me to the epilepsy clinic for the right treatment. He was a good example to me, because even he had epilepsy, and just did his work without any problems. Now standing outside the church I take this opportunity to take away their confusion and sorrows. I suggested to the mother that this could be epilepsy and explain of the importance to start using medication. With temper she says; “no, this is not epilepsy, the doctors said it wasn’t epilepsy. We paid a lot of money for the tests and the diagnosis, but they say it’s not epilepsy’. After my father has finished the service, he joins in our talk and explains that it’s not a bad condition. ‘I also went to the Kenyatta National Hospital with Moses, my son and spent a lot of money for the doctors and the tests, and nothing was found. But his teacher sent us to the right clinic where they diagnosed epilepsy and where they still give him the right treatment. Have you ever seen my son falling?’ The mother looks with surprise in my direction, and says no.
I explain to the mother that I could fall down more than five times a day, but that now my medicines control the seizures and that I have learnt to live beyond it. The mother is astonished, and asks; ‘so even a pastor’s son can have epilepsy?’ My father smiles and starts talking with pride;”He’s very okay, and very active, he’s very smart and he’s even working for Youth on the Move where they empower youth with epilepsy’. What a difference; a few years ago I was his embarrassment, and now he shows off with me. I feel grateful that we knew to come from far, that we have overcome our fears, shame and doubts. Now it’s my turn to encourage her to come to the clinic, I hope that my education on epilepsy will positively change the life of her son, and also her own life, the way Mr. Kamau had changed ours. It’s time they accept and have a positive attitude towards the condition.