The Challenges of engaging children with Cerebral palsy in the community

His diagnosis results came to me like a double tragedy. I was not ready to accept the results and live with it.

Baby Blessing was born normally but gradually developed perennial sickness over a month before the correct diagnosis of brain atrophy, that caused delayed milestone developments and much later autism, epilepsy, and finally Cerebral palsy.

This caused a rift between my husband and I, and we unfortunately separated. His family had convinced him that I had been bewitched and because of foul play, the child was cursed instead of him.

Because of this, I lost any form of support from him and his family and have been discriminated upon by the surrounding neighborhood, since no one wants to be associated with “witchcraft”. I could not find a job to provide for myself or my child and life became unbearable..

I could not bear the conditions in my village anymore so I moved to Nairobi, where people did not know me or the accusations that were being peddled around about me. However, starting my new life there was not so simple, people were not readily accepting of my son and me and as no one was willing to help me take care of my child, it became difficult finding a job to feed and house us.

With time, I came to learn of a support group for parents of children with autism and Cerebral palsy. Through the group, I learned valuable skills on how to better take care of my child.

We meet monthly and talk about social economic empowerment and learn how to better take care of our children with these rare conditions. We also do resource sharing; we bring together different foods and share with those who have little to nothing, as most group members have no support from their relatives or friends.

It is challenging engaging in any social activity, as there is a lack of understanding in the community. Our challenges are seen in any social activity we engage in because the community does not understand these conditions. It is not unusual for me and my child to lack a sitting space in the public service vehicles since no one wants to be near my child. Worse still is if we are the first to board the vehicle, very few people will want to board the same vehicle. This further sinks my heart but I cannot give up since I believe that one-day people will come to understand the situation and treat us with respect and dignity.

To be able to work, I enrolled Baby Blessing into a daycare center, but at times, I feel that I should stay with him because most of the caregivers do not understand how to care for a child with his condition. Many times, I have picked him up in the evening and he was still soiled. At the end of the day, no one seems to care for him and it is something that lots of parents go

through. However, we often just keep quiet, hoping for the best and we are sure that the dawn will soon arrive.

I am grateful for this forum hosted on Rare Diseases Day conversation held under the support of Positive-Exposure-Kenya and Boehringer Ingelheim/Making More Health. I have been able to learn more about other rare conditions and how to appreciate and accommodate them better into society.

I would request such conversations regularly, not only for Rare Diseases Day but also as a continuous process where we can have social influencers and other members of the society with us to drive the change in our community.

I believe if we do that, a lot will change. However, the change must first start with me and how I view others with rare conditions.