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Spina bifida gets help from Amelia Concours D'Elegance

7:16 PM, Mar 5, 2013   |    comments
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JACKSONVILLE, Fla. -- Spina Bifida is one of the most common birth defects. Worldwide, it happens in about 1 in every 1,000 births, but Diane Schroer did not know that. 

"When they told me my baby had Spina Bifida I said 'spina what?'" said Schroer, "I had never heard of it."

Schroer said when she discovered her youngest child had the congenital disorder, her doctor advised her to abort the pregnancy, and she did not.

"She kicked like crazy. I told the doctor he didn't know what he was talking about," she said.

Her child is 16-year-old Delaney, a junior at Stanton College Prep high.

"Part of Spina Bifida can be a lack of sensation. Some kids are paralyzed," said Delaney. "I have no feeling in the back of my legs or in either of my feet."

She is a teenager who loves to hunt and fish but has never lost focus of her dream.

"I'm hoping to be some kind of pediatric doctor, neurosurgeon like that," she said.

Delaney said living with Spina Bifida has not been easy. She has had 14 surgeries.

"There is also other effects it has on me that most people can't see," she said. "I've scoliosis, the curvature of the back."

Spina Bifida mom and treasurer of the Spina Bifida association of Jacksonville, Schroer said the organization is there to help families cope.

"It was through those associations and the friends that I've made that we've shared what to look out for each step of the way," said Schroer, "when to know if tether cord was affecting her."

She said when the economy tanked, like several nonprofits, Spina Bifida of Jacksonville was out of business. It became all volunteer-run.

Last year, the proceeds from the Concours D'Elegance gave it new life.

"Without the help of the Concours, I don't know where we would be," said Schroer.

Schroer said because of the Concours, about 40 families have a place they can meet to learn from each other and find support for their children.

"We talk about treatment and how to cope with certain things," she said. "Doctors will come and talk to us, it is needed." 

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