Letting go of misconceptions about Cerebral palsy
What do you do when all your hardships are brought about by the negligence of nurses and doctors? The people who you have trusted to deliver your child safely? I have asked this question to myself for years. But with the help of the Cerebral palsy support group, I have been able to learn more about the condition, how to care for children with the condition and finally how to advocate for rights of persons with Cerebral palsy. Cerebral palsy is a condition where a person has a group of various permanent movement disorders, which start to appear in early childhood.
My son, Favour, was born in 2014. Due to negligence from the medics, there were complications during birth which prolonged my labor. Favour had jaundice and was placed in an incubator for two months. As a parent, this was the hardest time for me, as he showed no signs of regaining his health again.
The situation developed and Favour had general body weakness, convulsions, derailed growth and delayed milestones. I visited multiple hospitals, it was a shock that I could not absorb; my son had Cerebral palsy.
I lived in denial of the diagnosis for a while. My family and friends started castigating me, saying that I was practicing witchcraft and it was my fault that my son has Cerebral Palsy.
Raising him has been a challenging and tedious task since; I have had no support from my family or friends so I cannot leave him alone. As one would imagine, this has a negative impact on my social economic activities, as I am not able to search for a job to fend for my family.
My peace and consolation only came when I was introduced to a self-support group for parents of children with Cerebral palsy. I developed a positive attitude from the interaction and the stories that other parents were sharing inspired me to love my son even more. Most importantly, I am learning what I need to do for his proper growth and development.
The Rare Diseases Day conversation held on February 28th, 2019 also was a turning point for me as I was able to see diverse conditions and interact with people brought together by the forum under Positive Exposure-Kenya and Boehringer Ingelheim/ Making More Health.
The forum was so educative and inspiring! I wish we had more of these forums, not only on Rare Disease Day, but a continuing series of conversations where we are able to tell our stories and educate the public. That way we can create a space where people can let go of their misconceptions and learn how to accommodate us in the community and treat us with dignity and respect.