Works of art, straight from the heart, to help her friend


Lauren Monk, 9, makes jewelry to sell as a fundraiser for Duchenne Dystrophy research, shown at home on November 14, 2012 in Gainesville.

Erica Brough}/Staff Photographer
Published: Sunday, November 25, 2012 at 5:22 p.m.
Last Modified: Sunday, November 25, 2012 at 5:22 p.m.

Lauren Monk's hands move quickly as she hunches over plastic containers filled with beads of all colors, ear wires and silver headpins.

Facts

FACTS

DDuchenne muscular dystrophy is a form of muscular dystrophy that worsens more quickly than other forms. It is caused by a defective gene for dystrophin, an important protein in muscles. Currently, there is no cure.

According to the U.S. National Library of Medicine, Duchenne affects one out of every 3,600 male infants. Boys with Duchenne have a significantly shortened life expectancy.

Organizations benefiting Duchenne research


Cure for Dale's Duchenne: www.curedalesduchenne.com

Cure Duchenne: www.cureduchenne.org

Parent Project Muscular Dystrophy: www.parentprojectmd.org

The 9-year-old grabs pliers and starts bending metal, hooking pieces together and sliding black and amethyst-colored beads into place.

In about five minutes she holds up a pair of earrings, which she places on a display overflowing with her creations. She's made about 600 pairs in the past month; in one two-night run, she made 180 pairs.

The third-grader sells the jewelry before school on Fridays to fund research for Duchenne muscular dystrophy, a disorder she knows well because of Dale Ginder, a schoolmate at Gainesville Country Day School she's known since kindergarten.

She explains her furious pace simply. She just wants to help her friend.

“I want to find a cure,” she says.

***

Dale Ginder rested his head on his knees as he eyes the Lego town he made on his bedroom floor.

He built a restaurant, a small bridge over water, a home and a small outdoor bar with patrons relaxing in chairs.

At the edge of town, a mishmash of pieces lies in a heap.

“That's the dump,” he said.

Dale is a 10-year-old boy who loves what you might expect a fourth-grader to love — Legos, soccer, mystery books and Nintendo Wii.

But when Dale wants to stand up to go play a video game, his father, Rick Ginder, has to gently help him rise to his feet. Dale's friends do the same at school.

“Dale falls a lot, and they all help him up,” his dad says.

Because of Duchenne, Dale's muscles need a protein that his body can't give him.

It is a genetic disorder that causes progressive muscle degeneration and weakness due to a lack of dystrophin, which is necessary to repair damaged muscle tissue.

“When he damages a muscle fiber, it's gone for good,” said Dale's mother, Lelia.

There is no cure for Duchenne, and Dale takes a steroid every day to help him walk.

After a series of blood tests, he was diagnosed with the disorder just before his sixth birthday in 2008, when his parents noticed he ran differently than the other boys during soccer games.

His mother noticed her youngest son tired faster, and he always had a tendency to fall more often than other kids his age.

“We kind of always thought he was going to be our couch potato,” she says.

***

As Dale grows, he asks more questions about his disorder.

A few Christmases ago, Dale asked about something a schoolmate told him would happen.

“Mama, am I going to be in a wheelchair?” he asked.

Blindsided, Lelia Ginder searched for the best honest answer.

“I don't know, Dale,” she said. “I hope not. But if you do, we'll make sure we get you a good one.”

Lelia Ginder said it's difficult talking to their son about his future. She and her husband prefer to answer Dale's questions as they come.

Dale used to say he wanted to be a Lego engineer when he grew up. At one point he said he could be a golfer.

“You listen to his dreams and what he wants to do, and you know none of that is going to happen,” says his mother, standing outside her home as Dale plays inside.

Once Dale was diagnosed, his parents worked with the Community Foundation of North Central Florida to start the Cure for Dale's Duchenne Fund. Money raised goes to Duchenne research, which Rick and Lelia Ginder are hopeful may help lead to a cure.

***

Lauren and Dale don't talk about the earrings or Duchenne. At school, they're just friends like anyone else.

But Dale does know about his friend's charity, and he feels the support every day when he and his buddies play their own versions of football and basketball that allow Dale to keep up.

“I get open shots,” he says with a smile.

The Ginders, parents and teachers have all noted Lauren's kindness, but she doesn't stop much to dwell on that.

She's focused on how to reach her initial goal of raising $1,000 for the research.

Nancye Childers, a director at Gainesville Country Day School, said she is moved by how students at the school treat Dale normally while still helping him when he needs it.

“He's just one of the guys here,” she said.

Every class at the school takes on a community service project each year, which Childers and Lelia Ginder agree helps the students “realize that there's something out there other than themselves,” Childers said.

***

Lauren's penchant for giving started at home.

She's watched her parents get involved in various causes around Gainesville throughout the years, including Tyler's Hope for Dystonia Cure, another local research effort for a neurological movement disorder, the Junior League and Children's Home Society. Her mother, Harmony Monk, a pharmaceutical representative, and her father, Harold Monk, who owned a wine and spirits shop, would donate often.

But life at home changed almost a year ago, when on Dec. 6, Lauren and her sister Olivia unexpectedly lost their dad.

At 42 years old, for reasons that are still unclear, Harold Monk's heart stopped.

“It's still really hard,” says Harmony Monk, who's watched her daughters be strong in the difficult year that has passed.

Though Lauren and Harmony have never spoken about it, the mother says she has seen her daughter's heart grow this year, especially with her decision to help Dale.

“She's really embracing helping other people,” Harmony Monk says.

When Lauren learned how to make earrings at school, she quickly decided she wanted to tag along during the weekly doughnut sales held at the school to benefit Duchenne research.

She made her first sale from a wooden bench on St. Pete Beach in Pinellas County, where her family was vacationing in October.

“People started crowding around me,” Lauren says.

At their home, Lauren's work desk is a folding table pushed against a couch in the living room. She works for hours on end combining colors to make unique pieces, never repeating the same design twice.

They all have to be different, she says.

As she looks up from her work, she talks about how she's raised $200 so far, her blond hair swings back and reveals her bare ears.

They're not pierced.

Contact Joey Flechas at 338-3166 or joey.flechas@gvillesun.com.

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