Looking at Maddee Helaire, you wouldn’t know anything is wrong. Although her struggle isn’t apparent, the 12 year old has been through a lot, starting in infancy.
The Helaire family didn’t have any time to prepare for the medical issues Maddee would face. Her mom, Tongé Helaire, had a normal, full-term pregnancy, but once Maddee was born, no one was sure what was going on.
“We stayed in the hospital for four months, and she was on a ventilator and had no muscle tone. She didn’t even cry or anything,” Tongé says. “Her story was such a mystery.”
Maddee was given six months to live, and Tongé and Maddee’s dad, Shannon, decided to take her home to care for her there. “I regretted it the first week we were home,” Tongé says. Within a week, they were back in the hospital. Eventually, Maddee was diagnosed with congenital muscular dystrophy.
Maddee didn’t just survive; she has thrived and exceeded doctors’ expectations. Although finding support was difficult at first, the Muscular Dystrophy Association (MDA) was there for the family throughout it all. “MDA pointed me in the right direction to support groups online,” Tongé says. “MDA helped us realize we weren’t alone. We weren’t the only family going through this.”
Once she was able to walk at age three, Maddee started taking dance lessons, and she still dances with the same teacher. “She was behind, but she never gave up,” Tongé says. “By us never treating her like anything was wrong with her, she never looked at herself as being limited.”
Maintaining her muscle strength is key for Maddee. “She has to do something physical for the rest of her life,” Tongé says. “She’s got to stay active.”
In addition to dancing and recording TikTok videos while social distancing at home, Maddee has kept up with sports news to know about the upcoming NFL draft, in which her brother, Clyde Edwards-Helaire, is a prospect.
“Maddee and Clyde are my two little peas in a pod,” Tongé says. Maddee has three other older siblings as well. Maddee took her first steps with Clyde because he has always been her biggest motivator, and she has always been his motivation on the field. “It really helps her. He believes in her and pushes her.”
A sixth grader at Our Lady of Mercy, Maddee does well in her studies. Each summer, she participates in MDA’s Camp Starlight, “which helps me to learn more about other people and their muscular dystrophy forms,” Maddee says. “And it gives us better insights and information to know the best way to care for me long term.” Due to the COVID-19 pandemic, MDA camps have moved online for summer 2020, but Maddee will still be able to stay connected virtually with her friends and counselors, which also stay the same year to year.
MDA has also given Maddee the opportunity to give back to those in need, as she was an ambassador with their Shamrocks campaign, raising money for research and care for others living with neuromuscular disease. The organization has created a microsite with COVID-19 guidelines and best practices specific to the neuromuscular disease community for those needing more information at mda.org/covid19.