“Life is not so much about what happens to us, but how we deal with what happens to us.”
As Carl and Nancy Veater listen to their daughter Shelby say those words in a video, they hold back tears, knowing they’ve taken them to heart, and that the foundation they’ve established in her name may one day help prevent the condition that claimed her life.
Last December, Shelby, a 19-year-old graduate of Yosemite High School, passed away at Valley Children’s Hospital due to complications from Spina Bifida, a birth defect literally translated to “split spine.” According to the Spina Bifida Association, about eight babies are born in the United States each day with the defect, which occurs when the spinal column of a child in utero doesn’t entirely close. Its effects can range from children who are born and grow up without even knowing they have it, while others will never walk.
The Veaters, who live in Coarsegold, describe Shelby as a child full of light. They say even as a baby, she was always full of joy.
“We looked at pictures right after she passed,” Carl said. “And we couldn’t find a picture where she didn’t have a big smile on her face.”
“In every single one, she was radiating,” added Nancy. “She was just our happy, beautiful girl.”
The Veaters said doctors initially told them Shelby would never be able to walk, as she had the most severe form of Spina Bifida, known as myelomeningocele. Myelomeningocele greatly increases the risk of nerve damage and hydrocephalus, where fluid builds on the brain. That, alongside a later diagnosis of a chiari malformation - a structural defect in the cerebellum - ended Shelby’s life.
But through all of that, the Veaters said Shelby never stopped smiling.
Always full of love and laughter
“That’s why we gave her the middle name Chase,” Carl said. “Because we were determined that we’d be able to help her walk, so she could eventually chase her big brother and sister around. And she did. When she was 4 years old, she was able to walk.”
Though she required orthotic braces on her legs in order to walk, the Veaters said Shelby was like any other child.
“She was completely ambulatory and liked to shop and do girl things,” Nancy said. “She was very much a girl’s girl. There were times where she needed to use her wheelchair, because she would get fatigued, but she really loved a day at the mall.”
Plus, Shelby really loved her cat Max, reading, cute shoes - though they were impossible to fit with her orthotics - and her nieces and nephews, now all younger than three, Nancy said.
“She loved being an auntie,” Nancy said. “She loved them as much as she loved her kitty. It was a close second. She loved those babies. Loved them. When they see her picture they still say ‘auntie Shelby.’ They really miss her.”
Oh, and singing. Shelby, who was attending Clovis Community College to one day be a special education teacher, loved to sing. Especially to some of her favorites like Pink, Taylor Swift, and Adele.
But she wasn’t exactly the best singer, Carl said with a smile.
“Whenever we were in the car, she would always sing along to the music. And she was a terrible singer,” Carl said. “She was so tone deaf. Everybody loved her for it. Bless her heart, she was so tone deaf.”
Car Show June 23
The Veaters said the Chasing Shelby Foundation (www.chasingshelby.org) will keep their daughter’s lovable, indomitable spirit alive as it raises money for Spina Bifida research, starting with a car show from 5-8 p.m. June 23 at Woodward Park.
“We call the foundation Chasing Shelby because she can no longer chase us, but we can chase her,” Carl said. “We can chase her spirit, her attitude, everything about her.”
The idea for the car show stemmed, at least partially, from Shelby’s desire to one day own a Shelby Mustang, a high-performance model of the Ford vehicle introduced in 1965 by designer Carroll Shelby.
“We always told her she’d have to be really rich so she could buy one of those,” Nancy laughed.
The Central Valley Mustang Club will have four of the original model Shelbys - a rarity in the auto world - at the show alongside classic and modern cars, food vendors, a raffle, and live music.
More vehicles and vendors are more than welcome, the Veaters said, and can enter either by visiting the Chasing Shelby website and clicking on the “events” tab, where registration forms are available, or by calling Karen at (559) 432-3877. The foundation also has a Facebook page, at www.facebook.com/chasingshelby.org.
Mostly, they said, their goal was to help others who find themselves in a similar position as their family.
“We want to be an advocate for families who have a child with Spina Bifida and empower parents to get their children what they need,” Nancy said. “A lot of times people fall through the cracks due to language issues and cultural boundaries. People are often afraid and go with what they’re being told as opposed to questioning and pushing.
“We want to bring more awareness to this disability, and let others know that Shelby is cheering them on, every day.”