Residents may notice a purple hue to the clock tower at the Wellington Municipal Complex this month as a result of a proclamation by the Wellington Village Council to once again help build awareness that September is Chiari Malformation Awareness Month.
Little known but affecting about one out of 1,000 births or more as research is now finding, Chiari malformation is a severe neurological condition that occurs when the brain herniates through the cranium, putting pressure on the spinal cord and nerves.
The condition causes crippling pain and life-threatening symptoms, and it desperately needs more research. Symptoms may be confused with other maladies and may not be debilitating until later in life. Chiari malformation often presents as severe headaches and pain, as well as vision, balance and speech problems from childhood on.
Wellington resident Jordan Ray abruptly discovered that she had the debilitating condition five years ago while playing in a softball game. This began her journey through the world of medical recovery and the development of her own Limitless Medical Logs, a product now available commercially to help combat the challenges sufferers of any chronic illness face when dealing with symptoms and doctors, specialists and testing.
Once a rising softball star, Ray now takes the field only as a speaker and champions awareness of Chiari malformation.
Ray said that little did she know that day in 2015 would be the last she would ever step on the field wearing a uniform. Suddenly she lost consciousness. She felt extreme, intense pain in her head, neck and back as she came to, looking at faces she no longer recognized.
With brain surgeries behind her and years more of hard work ahead of her, Ray is now studying business and entrepreneurship and continues making miraculous strides in her recovery from this daunting malady.
“In my efforts to spread awareness of this horrible disorder, I started where I live, in Wellington,” Ray recalled. “I met with Vice Mayor Tanya Siskind, who introduced the subject to the Wellington Village Council to spread awareness during September.”
Other recognition plans are currently on hold due to COVID-19, but the goal is to have a walk in recognition of Chiari awareness next year, Ray said.
Siskind has been in awe of Ray since she met her more than two years ago.
“We met Jordan, a remarkable young lady who took a challenge and turned it into something positive with her Limitless Medical Logs,” Siskind said. “We are pleased to help spread awareness of Chiari malformation throughout the village in the month of September.”
Driving by the clock tower gives Ray hope for the future.
“Every time I see that clock lit up, I feel like I am not alone and the whole community is behind me,” Ray said.