Boy's mystery illness revealed as painful chronic condition

Garrett Buckelew was diagnosed with Trigeminal neuralgia when he was 12.
Garrett Buckelew was diagnosed with Trigeminal neuralgia when he was 12.

HUNTSVILLE, AL (WAFF) - Garrett Buckelew said before his medical problems began, he was like any other kid his age. He was into school and sports. "Before I had this, it was oh, so much better. I played basketball. I felt like the star of the team," he said.

But at the age of eight, life changed, according to his mom, Leslie Martella. "He started complaining of his ears hurting. They would turn really super red."

Several doctor visits left his parents with little to go on. His mom was only told it wasn't an infection. One doctor finally made a referral to a specialist on a hunch.

Leslie said the specialist's diagnosis was a step in the right direction, but not specific. "Some type of neuralgia," Leslie recalled.

It wasn't until Garrett was twelve that a more definitive diagnosis was given.  Now they could put a name on it: Trigeminal neuralgia.

Trigeminal neuralgia is a chronic condition that affects the fifth cranial nerve, which can cause extreme and sporadic pain - anywhere from seconds to minutes in length, according to the National Institute of Neurological Disorders and Stroke.

Since that diagnosis, there have been several different drugs and even invasive surgeries that Garrett has undergone. There were major complications, including a case of life-threatening meningitis and leaking spinal fluid. At one point, doctors said Leslie's child might not make it.

"She looked me in the face and said 'It's minute to minute,'" recalled Leslie.

This was a terrible time for her and their family. "It was horrible. It's horrible every day 'cause I have to watch him hurt and I can't do anything about it," said Leslie.

Garrett knows that when he suffers, his parents suffer. "My mom's been there through all of it, and my dad. I love them more than anything in the world," said this now 16-year-old survivor.

He rarely leaves his room. A tube inside his head carries excess spinal fluid to his stomach where it's expelled.

Imagine being so young and spending the majority of your life centered around hospitals and doctor visits. But Garrett said for right now, his life is settling somewhat.

He said he misses school and friends and doesn't know what his future holds. He hopes it's less painful and more productive.

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