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Florida scientist working to find a cure for daughter's condition

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A local scientist is doing all she can to find a cure for a very rare disease. She has great motivation. It's her own adopted daughter who's battling it.

Amy and Tony Meacham adopted Moriah Joy in 2014. Their three sons were on board.

"I always thought we should adopt," 16-year-old Isaac Meacham said. "She's always happy so it's just a lot of positive energy."

What the family didn't realize at the time is that Moriah was born missing about 50 genes. When she started missing important milestones, like crawling, walking and talking, they took her to the doctor.

"Her birth mother had no indications from her family that we knew about so we were really in the dark about what was going on," Tony Meacham said.

She was diagnosed with a condition called Fragile X, a rare X chromosome deletion.

It's a condition so rare there's no treatment.

"There's not a lot of help out there," Amy Meacham said. "The doctors aren't sure how to treat something like this.

The Meachams believe fate brought Moriah to them. After all, Amy Meacham is a scientist who has begun studying her daughter's conditions in hopes of finding a cure.

"We are establishing groundbreaking research," Amy Meacham said. "We are pioneers for this research. There is no one doing this right now."

She says technology and help from the University of Florida's neuroscientists will guide them to therapy treatments that could help her brain cells communicate, leading to better communication skills and memory retention.

"We'll kind of let the neurons tell us what's going awry and what's out of whack," said Joe Lebowitz, a PhD candidate in the UF Department of Neuro Science. "These are the experiments that sort of gives us those very first inklings like, 'Well, this process doesn't work like it should.'"

"This gives us a new level of understanding that we wouldn't have previously had," said Doug Miller, also a PhD candidate.

Along with the therapy, the Meacham family has taught Moriah several things, like how to walk and play.

"Cognitively she's delayed," Amy Meacham said. "She has had a hard time retaining some memory and learning but she is capable of learning."

She's also learning sign language.

"It takes here a while but that's OK because it's taking a while for us, too. We are all learning together," Amy Meacham said.

All of the research comes with a cost. The Meacham family has started an organization called "Xtraordinary Joy." They've already raised $30,000 and are trying to double that this year.

"I'm not naive and I am an optimist and I am a hard worker and we will find treatment options," Amy Meacham said. "I just don't know if we can say a cure. It's complex but it's not beyond help."

The family is having a fundraising event Saturday. All proceeds will go directly to help fund the treatment.


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