Six years ago Freda Hartman’s eldest daughter’s life was cruelly cut short at 18 by an unidentified disease that had doctors baffled. Eleven months later when her second daughter succumbed to the same condition at 17 Freda’s youngest child became the light of her life.
Now her surviving daughter, Emmerenchia (15), is in a wheelchair, a victim of the same mysterious disorder. Asked how she’s handling it all she says, “I’m scared.”
The paralysis that began in her legs has spread to her spine. She has epileptic fits a few times a day and gets terrible headaches.
“It’s so bad sometimes she bangs her head against the wall,” Freda says. “Her feet are so cramped she can no longer wear shoes. Her hair is falling out and I’ve noticed her personality is changing.”
Emmerenchia watched sisters Jolundi and Marinda suffer and now it’s her turn.
All three girls were completely healthy until they turned 15. The Hartmans’ nightmare began in 2000, shortly after Jolundi’s 15th birthday.
Doctors suspected the problem lay with Freda and her ex-husband, Jolundi and Marinda’s father, and a possible genetic defect. But Emmerenchia is Julius’ daughter and when she fell ill they realised Freda must be the carrier.
In 2002, when Marinda fell ill shortly after her 15th birthday, they were referred to Professor Girish Modi of the Life Brenthurst Clinic in Johannesburg. He consulted an expert on genetic diseases at Harvard University in America but seven days of tests locally and DNA tests in America failed to solve the mystery.
Professor Modi says the only thing he’s certain of is that it’s a genetic disease that affects the back and spine.
“It starts round the age of 12 and problems with brain function are the first symptoms. It’s very subtle and is later followed by more noticeable symptoms such as stiff limbs, difficulty walking and fits.”
Late last year blood samples from the entire family were sent to a laboratory in Turkey for genetic analysis. “Hopefully the abnormal gene or chromosome can be identified and give us a better idea of what route to take,” Professor Modi says.
- Since our interview Freda has had a mild stroke. She can’t speak but is recovering at home and she’s doing better, Julius says.