Boy Raising Money For Mom's Rare Brain Disease

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What started as an annual garage sale turned into a fundraising effort for an 11-year-old East Lansing boy. He set up his own lemonade stand to raise awareness for a rare brain disease his mom was diagnosed with.

"He said, 'I could put a sign up about Moyamoya,' " said Lisa McCoy, recalling how her son, Elex, approached her about a fundraising effort.

McCoy was recently diagnosed with the rare disease. That's why Elex is using this opportunity to raise awareness and support.

"Just people don't know about it because it's a very rare disease," Elex McCoy said.

Moyamoya disease affects arteries in the brain, blocking the flow of blood to a person's brain. If left untreated it can result in a stroke or aneurysm. There's no cure for the condition and surgery is the only treatment.

Lisa McCoy says she's lucky her doctor caught it.

"I will have a scar but that's a little price to pay for having my life and hopefully a much better life than I had prior to surgery," McCoy said.

But getting her diagnosis wasn't easy.
McCoy says it took years of guessing till a doctor got it right. Even then she had to travel to California for surgery since only a few doctors can treat the disease.

"I learned you have to be your own advocate," McCoy said. "I don't want anyone else to have this and be misdiagnosed or die or have a stroke."

That's the whole point of the lemonade stand. Anyone who spends $2 on lemonade or cookies got a Moyamoya wristband.

"When people buy that we can donate the money to Moyamoya research," Elex added.

The family hopes that seeing more of these blue wristbands around town will bring attention to Moyamoya, and hopefully help people catch the disease early.

"I am so fortunate that I have such a supportive family and I have two little boys who love me so much and wanted to do something like this to help me," McCoy said.


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