Tongelia Helaire, 43, has a lot of experience dealing with loss.

Twenty-three years ago, her husband was killed in a car accident while she was serving in the Army.

Tongelia never got to say goodbye and was left to raise their son alone.

“It was hard,” she recalls. “I was in Texas when it happened, and the priest came to my dorm to deliver the news. I got my strength through prayer and faith. And I had my son … so that was my strength.”

A few years after tragedy struck, Tongelia found love again with her current husband, Shannon. The couple, who settled in Baton Rouge, went on to have three children – and their youngest came as a welcome surprise.

“I was about to graduate from nursing school when I found out I was pregnant,” she says. “At first, I was taken aback, but I was so excited when I found out she was a girl.”

The pregnancy went smoothly until the last month, when Tongelia felt like something wasn’t right. Tests showed no reason for concern, but ultimately, she wound up having an emergency c-section.

Maddee was born with severe problems – and doctors prepared her mother for the worst.

“She didn’t have any muscle tone, she didn’t move or cry … nothing,” Tongelia explains. “They couldn’t figure out what was wrong, but they gave her six months to live.”

Doctors were baffled. Extensive tests were inconclusive, and Maddee’s condition remained a mystery.

But despite the grim prognosis, Tongelia was determined to take her baby home.

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“I said if she only has six months, I don’t want her to be in the hospital anymore,” she explains. “And it was scary at first. I questioned my decision, but after we hit six months, I turned everything over to God and focused on getting her well.”

Because Maddee defied doctors’ expectations for survival, Tongelia had no road map for the future. Her daughter was on a feeding tube and couldn’t walk or talk – but despite the odds stacked against them, the family pushed on, loving and caring for Maddee around the clock.

Strength throughout the storm

As time went by, Maddee got stronger. By age three-and-a-half, she was talking and walking, and at 5, she got rid of her feeding tube.

“Doctors said none of that would ever happen,” Tongelia recalls. “And when they did, I tapped into my strength to find my daughter’s.”

Through a process of elimination, Maddee was eventually diagnosed with congenital muscular dystrophy.

Tongelia then connected with the Muscular Dystrophy Association (MDA) to find a network of resources that could help bring her daughter, now 11, a sense of normalcy.

Maddee’s favorite part about the organization is the Starlite summer camp, where she can interact with other children impacted by muscular dystrophy, without the constraints of every-day life.

“Once I saw how they take care of the kids,” Tongelia says, “I loved it. Maddee loves everything about it. Since she loves dancing, her camp nickname is Beyonce. And as a big LSU fan, she loves meeting up with some of the kids at games.”

The Tigers hold a special place in Maddee’s heart, especially since her brother, Clyde Edwards Helaire, is a running back for the team.

“She sees a lot of the older kids from camp at games,” Tongelia says. “She loves cheering for her brother alongside her friends. It’s just a wonderful experience for her.”

Stores raise $10,000 for muscular dystrophy

Camp Starlite is made possible through MDA fundraising – and to show her appreciation, Maddee now serves as a local ambassador for the organization, appearing at stores that participate in the various campaigns.

Last month, she visited several Shoppers Value Foods locations in the Baton Rouge area. Every March, the supermarket chain partners with the MDA for its Shamrocks Campaign, during which customers can buy a shamrock upon checkout with funds going toward muscular dystrophy and other related diseases.

This year, Shoppers Value raised more than $10,000, and Chief Financial Officer Danielle Satawa couldn’t be prouder.

“We reached our goal, and the cashiers were very dedicated to getting our customers involved,” says Danielle, whose father Skipper Jones leads the Shoppers Value team alongside business partner Ted Harvey. “It makes my heart swell, and it’s so nice to be able to touch the people in our community for good … it’s nice to give back. It makes me speechless, as a mom, to hear the stories of families who have been impacted, so I am glad we can do something to help these kids feel good.”

Tongelia echoes the sentiment and is forever grateful for the community’s involvement.

“It’s heartfelt to know that other people care,” she explains. “I had three normal kids, and then a kid with everything wrong. It gives you a greater appreciation for life. With me losing my husband, then being told my daughter wouldn’t live past six months … it definitely makes you respect what people do and lean on God, and you definitely have to know where your faith lies. I tell my daughter she’s the strongest person I know.” 

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