The Miracle Children

More than 800 University of Florida students sat on the bare, concrete floor of the Stephen O’Connell Center on April 1, 2012.

For the first time in 26.2 hours, they weren’t dancing, standing or participating in the Dance Marathon at UF activities that kept them and the children ambassadors of the Children’s Miracle Network busy.

All eyes were on the stage where Dance Marathon organizers gathered. Some held signs that read “FOR THE KIDS.” Those in the back hid their hand-painted signs as the overall director spoke. When it was time for her to announce the amount the marathon had raised, they lifted up their poster boards one by one.

Together, they formed the total: $886,726.15

That was the amount donated to the Children’s Miracle Network, which raises money for children’s hospitals all over the country. It is money that went toward research, equipment and education for patients at the Shands Hospital for Children.

But behind the numbers and the annual event that serves as the face of the fundraiser, there is a year of phone calls, meetings, events and planning.

The 16 overall directors and 250 captains are UF students who work closely with Shands and the children and doctors. They work to promote and raise awareness for their cause from the day of their appointment in April.

And what they do, they do for the kids.

Samantha Capone, the overall director for the 2013 Dance Marathon, which will be held April 13-14, said after talking with the children’s families and hearing what they have to go through, she can’t complain about anything.

“It’s really inspiring,” Capone said. “It makes all the work we do worth it.”

During the 2012 Dance Marathon, there were 39 ambassador families. As of mid-December, there were already 47. Here are the stories of two ambassadors for the Children’s Miracle Network and their journeys with Dance Marathon.

Ambassador Nathan Ferrell

Nathan sat at the Starbucks in the Oaks Mall and watched his mom line up to buy him an apple juice box. Sitting straight back, his feet barely left the edge of his chair. He wore a gray conductor hat, a sweater and a smile that didn’t falter once.

He talked about his excitement for Dance Marathon. He talked about how he was doing. He talked about Bailey McDaniel, a UF student and Dance Marathon Captain who serves as Nathan’s main connection to Dance Marathon.

“She’s my wife,” he said.

He talked until his mom got back with his juice and a cookie in the shape of a snowman. He held the six-inch cookie with both hands, carefully scrutinizing the surprise his mom brought him.

Nathan is 4 years old. He is a newly appointed ambassador for the Children’s Miracle Network and one of the eight new faces for Dance Marathon at UF.

He was born “seemingly healthy,” said his mom Amber Ferrell. But at two weeks old, he went into respiratory distress.

The doctors had no idea what was going on. He had low muscle tone, and after several tests, he was diagnosed with mitochondrial disease.

This disease is caused by failures of mitochondria, which are responsible for producing 90 percent of the energy needed by the body to function properly, according to the United Mitochondrial Disease Foundation.

This meant that Nathan wasn’t producing enough energy for organ development. He has a feeding tube to help him get all the calories he needs and a gastric stimulator that helps him eat. He is connected to an oxygen tank at all times that is carried around in a gray and orange backpack.

He’s been in and out of Shands so often that it is a home away from home. He sees regular specialists and goes in for routine check-ups.

“They’ve helped improve his life in many different aspects,” Amber said. “He enjoys going to see them.”

And although Nathan’s parents heard of Children’s Miracle Network from the hospital before, their first involvement with it was during the Swamp Dash and Bash in April 2012. The fundraising run led the Ferrells to be more involved with the organization, to Nathan’s appointment as an ambassador in August and to their participation in Dance Marathon.

“It’s been the most positive experience we’ve had,” she said of the Dance Marathon efforts. “To see all of the hard work, to be part of that is unlike anything I can explain.”

Amber now calls the Dance Marathon crew family. The Ferrell Family fell in love with them from the very beginning, she said.

The Dance Marathon staff took Nathan to play putt-putt golf, volleyball games, trick-or-treating and even wrestled with him. They looked past his difficulties and treated him like they would any 4-year-old boy.

“It’s so heartwarming to see them treat him like a completely normal child,” Amber said. “It’s so encouraging to see their ambition and joy and immense love for these kids.”

Even Nathan’s sisters look forward to seeing them and count down the days until they get to meet with them again.

“[Nathan] has been at the forefront all his life,” Amber said. “The students at Dance Marathon make them feel special as they do with Nathan.”

To follow the Ferrell’s story, visit http://lifewiththeferrells.blogspot.com.

Ambassador Zander Wyant

Zander remembers how much he loves dancing at Dance Marathon. He remembers the bounce houses. He remembers the activities they had during themed hours and the time he was able to stand and dance on stage.

He and his family had barely left the parking lot after this year’s marathon when he asked, “Are we coming back next weekend for Dance Marathon again?”

What he won’t remember is how he turned blue after birth. How he was airlifted to Shands at UF. Or how he was seen at three different hospitals by the time he was 9 hours old.

But his mom, Kristin Wyant, remembers all of it.

She recalls how he was born at 2:03 p.m. on Nov. 29, 2006 at Capital Regional Medical Center, and that he was immediately taken to Tallahassee Memorial Hospital’s Neonatal Intensive Care Unit.

She remembers being on the phone with a nurse from Shands while recovering from her C-section. She remembers how the nurse described, step-by-step, what the doctors were doing when Zander arrived in Gainesville.

Zander is now 6 years old. He has been an ambassador for the Children’s Miracle Network since 2007. By the time he and his family became involved with the organization and Dance Marathon, he had already had four surgeries.

Kristin said being involved with the organization has given them a support group. As they participate every year, they watch the other miracle children grow up and the dancers watch Zander grow up.

“It’s like we became part of a family,” she said. “I think it’s made us better people.”

On the day Zander was born, the doctors at Shands discovered he had transposition of the great vessels, or TOGV. This meant that his heart wasn’t processing blood properly.

Whereas a normal heart would pump blood in a figure-eight shape to process oxygen, Zander’s heart was making two individual O’s. The blood going to his organs wasn’t oxygenated. In the next few weeks, he went through two heart surgeries and a stomach surgery.

Everything was going well until Zander was 4 months old. Kristin took him to the pediatrician for a regular check up. After a physical exam, the doctor had a panicked look on his face. He didn’t say anything, but asked Kristin to get her son a CAT scan.

The discovery was that Zander no longer had a “soft spot,” the space in an infant’s head that allows room for the brain to grow. On average, children should have a soft spot until they reach the age of 1. He visited a neurosurgeon who created an artificial soft spot in the front area of his head.

Since then, Zander has been doing well. He attends kindergarten and recently had the chance to fulfill his dream of becoming a firefighter. The Dance Marathon organizers teamed up with the Alachua County Fire Rescue to make Zander a firefighter for a day.

He dressed up in a child-sized firefighter suit, sat in the driver’s seat of a fire engine and even used a fire hose to put out a controlled fire.

“I loved it,” he said.

Kristin said during the first year of Zander’s life, she was unsure of his future, but now, she watches his growth with certainty.

“It’s a blessing every day to see him growing and becoming the person he’s going to be when he gets older,” she said.

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