In a recent NY Times article, Karen Landman proficiently and persuasively highlighted the plight of siblings of children with disabilities as a disadvantaged population. Backed by research going back to the 1970s, Karen summarized what may appear scary to some people.
I am Sharyn Kagereki, and Karen Landman’s article greatly relates to my life growing up. My sister Vivian, who is currently 16 years old fell ill because of meningitis three weeks before her 4th birthday which caused her life to come to a standstill. She began complaining of a migraine and in a split second, she collapsed and began foaming from the mouth. I yelled for my grandmother’s aid, and she urged me to run to our family friend for transportation who lives about 2 miles(3.2km). It is well known that getting transportation for medical emergencies is quite limited in villages in comparison to Western countries. The nearest clinic to where we near at that time was an hour away. After we arrived at the clinic, Vivian was assessed and diagnosed with Malaria by the doctors which was a misdiagnosis that displeased my grandmother. We then transferred her immediately to Embu General Hospital where she was yet again misdiagnosed and this time with bacterial meningitis. My uncle, who is a doctor, arranged for my sister’s transfer to Kenyatta Hospital where a team of doctors was waiting for her. She was then rightly diagnosed with viral meningitis which had caused severe damage to the right lobe of her brain. The doctors decided to place her in a medically induced coma to minimize the brain damage. While being discharged two months later the doctors alerted us that her right side was paralyzed. We were in complete anguish at the time and by God’s grace, she regained her mobility, but she had lost her ability to speak, developed dyspraxia, and began having severe seizures.
In Kenya, Vivian was enrolled in a special needs school however they didn’t have the necessary tools and understanding to cater to her needs and wellbeing. My sister’s adjustment to studying in the USA was greatly aided, especially by her middle school teacher Kelli who was patient and able to understand her communication style which greatly benefited her and the family at large. In a single-parent household, my mother had to quit her job to become the primary caregiver to Vivian. This took a toll on her mental and physical health while adjusting to the change. The societal belief towards Vivians’ special needs caused my mother to isolate herself. Luckily, she joined a group called KAA (Kenyan Autism Alliance) without this community she says that she would have not survived living through isolation. Her favorite quote by Shannen Heartz is, “And just as the Phoenix rose from the ashes, she too will rise. Returning from the flames, clothed in nothing but her strength, more beautiful than ever before.” As for me, I was just a young child without an understanding of what had happened to my sister. Having grown up as the “glass children” with our youngest sister has impacted our lives in many ways.
Despite the hardships, I wanted to use my influence as a model to make a difference and bring awareness to my community. Our human brain can understand things to an extent, just because someone cannot talk does not mean their brain cannot function. Disability is not inability. As we all know Stephen Hawking lived with a disability, but he became a great physicist and author among other accomplishments. Using my platform, my goal is to be impactful and partner with local NGOs in Kenya and the diaspora here in the USA. The topic of special needs is not well known or talked about in Kenya. I aspire to integrate the topic of special needs into the school systems by providing education at a tender age since children are susceptible to grasp knowledge. Vivian’s middle school teacher and her approach is a success story that I would like to replicate. I am willing to use the path of Miss Kenya USA 2023 for the sake of the underprivileged special needs families in my motherland.
“Each one of us can make a difference. Together we can make a change.”