By MORGAN FRISCH
Recorder News Staff
MAYFIELD — Camryn Meca is not your typical teenager. The 16-year-old advocate is explaining to the world that her sleepiness does not stem from laziness, but a rare neurological disorder.
Meca was diagnosed with narcolepsy with cataplexy two years ago. Earlier this month, she held a bake sale and raised $1,000 to donate to Stanford University in California. The university’s medical team evaluated and treated Meca’s disorder, which currently has no cure. Narcolepsy is a neurological disease which affects the brain’s ability to control sleep and awake cycles. Cataplexy, which 70 percent of people with narcolepsy have, causes sudden loss of strength and muscle control. Meca’s case is brought on by extreme emotion, such as laughing.
“[I did it] to help for research, for not just me, but everybody else who has narcolepsy,” she said.
Lori Meca, her mother, was holding a garage sale at their home in the village of Mayfield and suggested the bake sale. Camryn sat by a poster which described her disease. She used social media to spread the word about the fundraising efforts. Baked goods were $1 each, but most of the money was raised through donations. She answered questions from people who approached her.
“I definitely didn’t expect to have the turnout that we did. I was expecting more like a couple hundred dollars, I would have no idea that I would have raised a $1000,” Camryn Meca said.
During two days she saw around 100 people. Some were community members, while others she didn’t know at all. After raising a little over $500 on the first day of the bake sale, Camryn decided to host it for another day with a goal of $750.
“I don’t even know how to express in words how proud I am overall. Proud beyond words of her before the bake sale even, just watching her struggle over the last two years and in the last probably four months of watching her really put her life back together,” Lori Meca said.
Camryn attends Mayfield Central School District, is active in sports, keeps a high grade point average and works a part-time job. However, she also maintains a strict schedule which consists of taking three different medications and taking naps throughout the day.
Lori said the difference since the medications has been outstanding. Camryn was sleeping throughout the day and would fall asleep during school.
“Staying awake for 48 or 72 hours non-stop, without any reprieve from that sleepiness, that’s how someone with narcolepsy feels day in and out,” Lori Meca said.
Camryn said her hope is to give people a better understanding of what narcolepsy is. The two plan to continue advocating and have considered holding a 5K in the future. “It really is our hope to educate, not only the community, but also in talking about it and raising awareness in the hopes that providers will also become educated and learn about the latest medications and techniques to help folks that are struggling, even just in the diagnosis process,” Lori Meca said.
Those interested in donating can mail a check to Stanford University Development Services, with a note that it’s intended for narcolepsy research.
“She’s definitely doing a world better than even a year ago. We have seen huge improvements, I don’t know that she’ll ever be back to where she was before her symptoms started, it’s a huge presence in her life, it probably always will be, but the good thing and the reason that she wanted to raise money and give it back to Stanford, is because they gave her a sense of freedom back,” Lori Meca said.