What brings so many youth with epilepsy and people in their community together? It all started in 2005 when Karijn visited Kenya for an internship at Straight Talk in Kariobangi. During this period of time the media reported the case of a boy with epilepsy who was almost naked and chained by his mother so that he wouldn’t walk away while she was at work. With Karijn’s personal experience with epilepsy, she felt the plight to find out what could be done to improve living standards for people with epilepsy in Kenya. As a result she was inspired to check out organizations that offered services to persons living with epilepsy. She found out about KAWE at Hurlingham and met with their staff in 2005.
Their great support enabled Karijn to conduct focus group interviews with youth living with epilepsy at KAWE’s clinics in Nairobi. This provided knowledge on the needs of youth with epilepsy for living a healthy and pro-active life. Karijn returned to the Netherlands with a documentary and proposal presenting the desires of the youth with epilepsy to turn their challenges to opportunities. Patricia Ngari, Samuel Aloyo, Steve Obong’o and Karijn formed the board for the registration of Youth on the Move. The name said the most important objective for the youth with epilepsy: giving them ownership in living an active a life. After two years of hard work, patience and persistence the registration of the organization was approved briefly after the post-election violence in 2008. UCB Pharma, the Dutch youth with epilepsy and Cordaid gave their significant contribution to start the services.
KAWE’s active volunteers assisted in searching for a venue and Peter Nyette brought us to the New Life Church Building in Nairobi West where the youth created their Movers Cyber and training room. The Movers Cyber was meant to offer access to information and an online platform to share experiences with people from other countries. Unexpectedly, customers started walking in which made the Movers Cyber an income generating activity where the profits are utilized in the peer education.
In 2008, 6 youth were trained as peer educators by Karijn. Their success enabled an unexpected quick growth; in 2009 the organization trained 12 youth with 4 staff members, and in 2012 the organization even counted 15 staff members and 24 youth in training. Whereas the organization was firstly only targeting youth in Nairobi, people demanded the services to be offered countrywide. It started with Pastor Korogoren from Chebitoik who kept on asking when the Movers would come to educate his community members. The New Life Church offered the transport and accommodation for the peer educators Daina and Augustino to share their gained knowledge and experiences.
During this same year the current honorable high court judge Mumbi Ngugi showed interest in the services of Youth on the Move and asked how she could make use of the concept for the empowerment of youth with albinism. This brought partnership between AFEA and YotM where youth with albinism also received the peer education with YotM’s model. The partnership with Mumbi Ngugi led to the awareness of the importance to educate the youth with epilepsy on their rights. For this reason, the ‘Mind you Rights’ program was initiated with the help of Bobby Mkangi who assisted in developing the manual with information on rights and responsibilities and how to uphold them.
The youth wanted to do more than only reaching out to the people in their community. They also wanted strong partnership with the major stakeholders like the Ministry of Health, Kenya Society for Epilepsy and KAWE. Together with Prof Kioy, they sought to form an interdisciplinary team and the first meeting was held in 2009 at Prof Kioy’s office with the Ministry of Health and Sanofi which ushered in the birth of NECC; the National Epilepsy Coordination Committee.
From 2011, YotM has partnered with various NECC-members, in epilepsy education, lobbying and advocacy. Since then all provinces have been reached except the North Eastern region. One of the means in the awareness creation and empowerment is the Movers Music. With the help of the local famed musicians the youth produce songs on epilepsy in their vernacular. In total 13 songs have been realized and the youth who participated in this activity have been equipped with entrepreneurship skills and supported with seed capital to start small businesses.
Whereas the organization knew various successes, it also encountered challenges and losses. Whereas the youth with epilepsy were educated, we found out a little late that we also had to involve the parents. Mohamed in Msambweni had learned the facts on epilepsy and educated the people around him. However, his mother wasn’t convinced about the facts on epilepsy and didn’t want him to be seen in hospital when he had a status seizure. We intervened too late to ensure his recovery. We were faced with his passing. Therefore the manual ‘Bring them up!’ was written and published and the Parents Meetings kicked off at the centre and various clinics.
In the process of the awareness creation, the Movers encountered more groups of people with the desire to be informed about epilepsy. This included the Community Health Volunteers who since 2015 avail themselves for the trainings offered so that they can contribute in mobilizing the people with epilepsy in their community. Besides that, the Movers were even welcomed at the Correctional Facilities to train the inmates with epilepsy. Therefore in 2015 Turn your Moves was born – an initiative to create awareness at the correctional facilities. With the help of inmates the manual was written and approved by the Prisons Headquarters. Since then we have conducted awareness in all the maximum prisons in Kenya and some medium prisons.
With these great outcomes in the first eight years of Youth on the Move, Karijn decided to return to the Netherlands in 2016 and left a strong team that keeps on enabling youth to turn their desires in successful actions. We wish to share our gratitude to all people who have enabled us to train 144 youth as peer educators and to reach over more than 500,000 people in the awareness creation countrywide. We Move Ahead together!