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11-year-old fights through setbacks, community pitches in
Defying the odds
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Madelyn Gurganus enjoys Disney World. - photo by Photo provided.

Community rallies for Madelyn

The following sponsored the Make a Way for Madelyn 5K: Preferred Materials (Jared Branch) and Georgia Game Changers Running Co.

The following donated items: Richmond Hill Pharmacy, Dorchester Hunting Preserve, South Bridge Golf Club, All Things Chocolate and More, Jumping Jacks, Southern Image, Premiere Jewelry by Tracy Harper, Kelli’s Kreations by Kelli Oglesby, Initial Outfitters by Leslie Collins, Thirty One by Leann Flemmings, Papa’s Pizza of Richmond Hill, Fun Zone of Pooler, and Steel Magnolias Salon by Liz Grizzard

Contractor for renovation and swing: JJ Select, Rhonda Jones

Community volunteers: Georgia Floors, Folley Construction, ProBuild, IDS Cabinet Co., Plantation Lumber, Counter Designs, Firefly Lighting, Environmental Wood Products, Heat and Air by Royal Moss and Bethel Baptist Church members and Pastor Brian Cooper

Madelyn Gurganus has defied the odds for all 11 years of her life — even before she was born.

Rhonda Gurganus, Madeyn’s mother, needed back surgery during her fifth month of pregnancy.

"I was told to abort because I could potentially be paralyzed from the waist down," Gurganus said. "I waited until after she was born to have the surgery. Before she was even born, the devil fought hard for her."

Madelyn was born March 13, 2005, a healthy baby girl weighing 8 pounds, 14 ounces. She immediately captured hearts and would soon begin forming words, sentences and was walking with ease by 9 months old.

Despite her beautiful start, it wasn’t long before the odds started stacking up against her.

At 9 months, Madelyn and her two older brothers — Bradley, now 16, and Shane, now 13 — were all diagnosed with fifth disease. It seemed the illness had run its course and everything was fine.

But the Gurganus family soon found that Madelyn getting sick more often. Shortly after, she was diagnosed with croup, which caused her to cough and struggle to breathe. This went on and off for the next 4 months.

On April 14, 2006, at 13 months old, Madelyn was at the park playing with her family when her grandmother noticed her legs appeared "modeled," or blotchy. Within 30 minutes, Madelyn began vomiting and continued to do so until 1 a.m. She began panting, almost like a dog would, and struggled to breathe.

The next day, the Gurganuses found themselves in the emergency room and began a journey with Madelyn they never anticipated. Rhonda and husband, Jerry, waited anxiously as they watched the medical staff struggle to get an IV started on their baby girl. They sedated and intubated her only to be forced to revive her. She coded.

Rhonda and Jerry Gurganus were told resuscitation took 10 minutes. Madelyn was taken by helicopter to another hospital that was equipped for pediatrics.

The Gurganus family made the hourlong drive to the new hospital and learned the 10 minutes was actually an hour. They had no clue of the extent of the damage.

"We were told our daughter was very sick. The main cardiologist came in and told us Madelyn had severe dilated cardiomyopathy," Rhonda Gurganus said. "Her heart was so enlarged, it was pushing her other organs down and only functioning at 14 percent. We learned the next 24 hours would be critical. They told us they didn’t think she would make it through the night."

From this moment on, the Gurganus family began living a nightmare that seemed to have no end. Madelyn did, in fact, make it through the night, defying the odds doctors had predicted. They discovered she was at risk for losing her right leg; there was no blood flow and no pulse. She began having seizures.

"Madelyn coded again as soon as they put her on the phenobarbital (to treat the seizures); a crash team came in, and it was 15 minutes later," Rhonda Gurganus said. "I felt that we had lost her. Madelyn went into cardiac arrest and, at the last minute, she came back to us."

Doctors said her heart could not take this pounding. They felt they had done all they could for her. After signing a "certain death waiver," Rhonda and Jerry Gurganus decided to send their baby girl to Duke University Hospital, where they hoped she would have a fighting chance.

"I remember standing at the helicopter pad and the door opened," Rhonda Gurganus said. "The pilot got out and spoke to us. He said, ‘I know I have precious cargo. I am also a pastor. I felt led to tell you I will be praying the entire flight and will call you when we land.’"

This small token of kindness gave the Gurganuses the hope they needed to make the drive. Thirty minutes into the drive, they got the call. The pilot said the words they needed to hear, "We’ve still got her."

Madelyn survived the flight to Duke and was put on an Extracorporeal Membrane Oxygenation, or ECMO, machine within 15 minutes of arriving. The machine kept her alive.

Madelyn regained a pulse in her right leg. Despite being told she would be blind and would not be able to speak, she regained both senses. Despite being told she would need a heart transplant, she defied odds again, and her heart was fully restored.

Recently, Madelyn and her family received a trip to Disney World. The Sunshine Foundation granted a wish for the now 11-year-old girl who continues to defy the odds.

"It was very nice to go and relax and not worry about a thing," Rhonda Gurganus said.

The community has also pitched in and blessed Madelyn with the Making a Way for Madelyn 5K last month in J.F. Gregory Park and a recent garage renovation that has given Madelyn a space of her own, fully equipped to meet all her needs.

Madelyn’s journey is not done. She underwent a spinal fusion surgery on Friday in Atlanta.

All these years later, surgery on the anniversary of when her health journey began; Madelyn still defies odds. Her story is to be continued.

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