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Family Fights Rare Genetic Disorders

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The parents of Moriah Joy Meacham have one word to describe their daughter: extraordinary.

They said she was born beautiful, healthy and perfect.

Except she wasn’t.

Six years ago, Amy and Tony Meacham added Moriah to their family of five- their older sons were begging for a sister. Now, finally they had one.
As the adoption process was being finalized, they received some jarring news.

“We got a diagnosis for Moriah that we were not expecting. It didn’t have a pretty name, it didn’t have syndrome or disease. It had nothing,” Amy Meacham said.

With such little information on their daughter’s rare X chromosome deletion, Amy and Tony started Xtraordinary Joy to raise money to help find treatment options.

“There was no research, no therapies on it, so my wife being a scientist decided to try to maybe form a foundation and raise enough money to maybe get some research done,” Tony Meacham said.

Sunday marked the third annual human foosball tournament to grow their current fundraising total of $90,000.

“The organization has just grown and they’ve gotten more people, more sponsors to be involved in it. It’s amazing what they’ve been able to do so far,” family friend Kelly George said.

Among those in attendance were the researchers working on finding therapies.

“We’re excited to get them the money and get them started on the project,” Amy Meacham said. “We want to make it better and we want answers.”

Getting answers not just for Moriah, but for people around the world.

“We really feel like the findings will contribute to research for autism for intellectual disability, for epilepsy. It’s something greater than us.”

For more information on Xtraordinary Joy, go to www.xtraordinaryjoy.com.

About Grace King

Grace is a reporter for WUFT News who may be contacted by calling 352-392-6397 or emailing grace.king@ufl.edu.

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