GAINESVILLE, FL (352today.com) – When Amy Meacham adopted her daughter Mariah Joy nine years ago, she had no idea the journey that lay ahead. Moriah was born with a rare genetic condition called Xq27-Xq28 deletion, which causes a variety of developmental and health issues. However, Moriah’s joyful spirit has inspired her mother to turn this challenge into an opportunity to support others facing similar struggles.
Moriah was diagnosed with her condition at just 16 months old, leaving Amy, a cancer researcher by trade, scrambling to understand the implications. “I looked up the missing genes and realized she is predisposed to so many things,” Amy recounts. “It’s manifested in numerous ways – health issues, cognitive delays, psychological and mental challenges that we’re faced with every day.”
Despite the daunting prognosis, Amy was determined to help Moriah reach her full potential. She reached out to colleagues at the University of Florida to create stem cell models of Moriah’s condition, allowing researchers to study the genetic deletion in a lab setting. This laid the groundwork for the creation of Xtraordinary Joy, a foundation dedicated to funding research and supporting families affected by this ultra-rare disorder.
“We’re the only ones doing anything about Xq27-Xq28 deletion,” Amy explains. “We’ve provided almost $400,000 to the University of Florida for research on these rare conditions over the past seven years.” The foundation has also created a private Facebook group to connect the 42 known families around the world dealing with this diagnosis.
But Amy’s vision for Xtraordinary Joy extends beyond just research and community. She wants to create opportunities for inclusive environments where children like Moriah can thrive. “It’s really opened my eyes to what I want for even my typically developing boys – for their peers to be including children like Mariah,” she says.
Amy notes that Moriah’s joyful spirit has certainly brightened the lives of those around her. Videos of the 10-year-old singing, dancing, and exploring the world with unbridled enthusiasm have inspired the Xtraordinary Joy community.
While the journey has been challenging, Amy reflects on how Moriah’s diagnosis has shaped her own path. “This speaks to anyone who thinks they’re on a path they didn’t want,” she says. “My life is also my calling, and I think that could be for so many people – if they just need to embrace where they are and know they’re where they’re supposed to be.”
If you wish to donate or volunteer, contact Xtraordinary Joy at 352.665.2351 or email info@xtraordinaryjoy.org.