Rising against all odds

MAPELA – Lesego Chauke may look different than most 15-year-olds, but she is a brave fighter who have struggled with Chiari malformations (CMs) since birth. Some treat her like she is holy or angelic as they don’t quite know what to make of her, says her mother, Makoma Chauke, but she is just a normal teenage girl who likes rap music and watches TV.
According to Wikipedia, CMs are structural defects in the cerebellum, the part of the brain that controls balance. “Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, but when part of the cerebellum is located below the funnel-like opening to the spinal canal, it is called a Chiari malformation."
 Lesego’s condition causes her severe pain.  “When she was three years old, she would start grabbing the back of her head and say ‘mama hurt, mama hurt’ and then she would suddenly lose her balance,” explains Makoma. “However, she is my warrior princess and she is strong.”
The Mapela community has rallied around the teenager and they all know that she suffers from a rare condition which only occurs in about one in every 1000 births. Along with Makoma, the community participated in a march on Saturday to raise awareness for all children and adults who suffer from CMs.
Makoma says that she feels for other parents of children living with the condition and encourages them to keep faith by describing how Lesego defied the doctor’s predictions that she may not live beyond her childhood.
“Some people react inappropriately when they see her,” she explains, adding that Lesego has her own personality and is just like most other teenagers.” They don’t understand and point, stare and make faces. ”
Nine weeks ago, Lesego underwent brain surgery. Mamikie Taunyane, a good friend, said she was by Lesego’s side in the hospital. “I want the medical people to find a cure for her,” Taunyane said. “I felt that I wanted to do something to help her.”
Taunyane made special bracelets and sold them at the march to really support her friend. The money raised at the march will go towards medical support and research. Dr. Pat Mphahlele is one of the researchers at the University of Witwatersrand Medical Centre and his research aims to identify the genes that cause CMs and perhaps even a cure. “We are studying tissue from within the cell itself to find the exact cause,” he says. “Lesego has been a revelation and we hope to help her before is too late.”
People with CMs have an expected lifespan of less than 35 years.