When Amy Meacham bought masquerade masks on Bourbon Street in 2010, she didn’t know what she would use them for, she just knew she needed to buy them.
“Seven years ago we bought these masks not knowing what they meant but knowing they meant something,” she said.
On Saturday night, Meacham and 250 other people donned those same masks for the second annual Unmask Joy Masquerade Ball to benefit Xtraordinary Joy. The nonprofit raises funds to work toward treatments and a cure for rare chromosome disorders, like the one Meacham’s daughter was diagnosed with in 2015.
Amy and Tony Meacham adopted their daughter Moriah Joy in 2014.
“She is definitely a joy to us all,” Amy Meacham said. “Her name is very appropriate.”
About 11 months into Moriah Joy’s life, Meacham noticed some developmental delays that prompted her to bring her to the doctor. Tests showed that she had a rare X chromosome deletion resulting in 50 missing genes, Meacham said.
They were told that the disorder was complicated, and a cure doesn’t exist, she said.
“We wanted more answers,” she said. “I just knew that there were answers out there, and I was going to find them.”
So Meacham — a longtime leukemia researcher — began searching for a cure. Along with her husband, she launched Xtraordinary Joy in May 2016 to fund her research efforts. Now, she works with a team of researchers at UF to develop treatments for rare chromosomal disorders.
Currently, the team is working on reprogramming Moriah Joy’s blood cells to become brain cells they can study. Through these brain cells, researchers can explore what deficiencies exist and develop target therapies to correct them, she said.
Moriah Joy has made some progress through the help of therapy. Her family is teaching her sign language to help with her communication. For right now, her vocabulary is made up primarily of “hi” and “wow,” Meacham said. Due to underdeveloped facial muscles, Moriah Joy can’t chew food, so she’s fed formula.
The Meacham’s story has captivated people in the community.
Allison Derovanesian, a first year UF Pre-Health student, is working with four other students to create a student organization for the cause.
Derovanesian received an email from the university about the non-profit Xtraordinary Joy and after reading Moriah Joy’s story, decided to get involved.
“It’s very inspiring for sure, and I’m excited to be able to help out with it here at the UF campus,” the 23-year-old said.