Diagnosis of rare disease motivates Natchitoches native to raise awareness

By Corey Poole

After a bike accident, Curtis Harrington had a concussion. Doctors performed a cat scan to make sure there wasn’t bruising on his brain. What they discovered was life changing.

Curtis had a brain AVM (arteriovenous malformation), which is a tangle of abnormal blood vessels connecting arteries and veins in the brain. A brain AVM creates a hostile environment for blood circulation throughout the body.

Curtis’ father called lifelong friend and high school classmate Dr. Julien“JuJu” Bailes, who recommended a doctor in Pittsburg for the treatments Curtis would need in order to overcome this rare disease.
As Curtis began to research the disease, he quickly found out just how rare it is. Rare diseases, defined as those affecting less than 200,000 people, receive little funding and attention. There are less than 60,000 cases of brain AVMs reported in the country.

Curtis had questions like “Can I pick up my niece, Alice, even though she is over my weight restriction of 30 pounds?”

“As an AVM sufferer, I have experienced the frustration caused by the lack of research, information, and guidance pertaining to my condition,” he said.

His frustration led him to create Team Harrington and host a local fundraising event where he currently lives in Nashville, Tenn. The fundraiser benefittedThe Aneurysm and AVM Foundation (TAAF), based in California.
“I feel like it’s my duty, in carrying this thing around, to do some good through my situation,” said Curtis.

“It’s been a struggle to say the least.”

With a $2,000 goal, the event quickly raised over $9,000. Curtis said this was largely from the Natchitoches area.
“People really reached out and supported the Foundation,” he said. “It was moving to see how many friends and family members donated their hard earned money toward AVM research.”
Rodney feels a mix of emotions including pride concern and gratitude. Gratitude toward Dr. Bailes who was a constant source of information and support, concern over his son’s ongoing and complicated treatment and pride for his courage.

“I’m very proud of him for stepping forward as he found out he had this,” said Rodney. “His involvement will shine a light on this condition, which can have a positive affect on thousands of people.”