A Rocky Hill young lady has been dealing with Chiari Malformation since she was born and now, her parents along with other families in Connecticut are trying to help raise awareness of the rare disorder by holding a walk in September.
When Torah Ferrebee was born, her parents noticed her balance was off and she was suffering from double vision.
“We knew something was wrong,” said mother Jan Wahnon Ferrebee.
Jan said her daughter had a number of medical procedures at a young age including eye and ear surgeries, treatments to remedy her hip dyspepsia and she was even placed in a body brace for a period of time.
When Torah Ferrebee was four years old, she had MRI on her brain after complications with her eyesight. The doctors discovered that she was suffering from Chiari Malformation.
Chiari Malformation “is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms,” according to the Conquer Chiari Walk Across America website.
In June 2005, Torah Ferrebee had to have brain surgery to "relieve pressure caused by herniated cerebellar tonsils," according to the Conquer Chiari Walk Across America website.
Following the surgery, Ferrebee had to “relearn everything at five years old,” including walking, according to her mother. Seven years later, Torah cannot play sports and uses a word processor at because she struggles with making straight lines. She still has to have physical, occupational and speech therapy.
However, the almost 12-year old girl does lead an active life and enjoys reading and swimming.
“She is perfect, but you do not realize it is a daily struggle,” Jan Wahnon Ferrebee said.
The Conquer Chiari Walk Across America will be holding a to raise awareness of the rare disorder. The event will be at the Westbrook High School Track, located at 156 McVeagh Rd., from 3 to 6 p.m.
“The event is to help raise awareness on the disease and to help people who suffer with this each day,” Jan Wahnon Ferrebee said. There were 15 families with a member dealing with Chiari Malformation at the event last year. The organization raised more than $900 in 2011.
For more information or to make a donation, visit https://www.conquerchiari.org/ccwaa12/TorahFerrebee. So far, $368 has been raised for Torah Ferrebee.