Before Valerie Cancino was born, her parents knew she had a rare but serious condition that would leave her without a portion of her spine.
They also were told that she’d be born with a critical cardiac defect that would require open-heart surgery in the first week of her life.
What’s more, her twin sister had died beside her in the womb.
“We lost Angelica half way through the pregnancy, so they were watching Valerie very closely,” said her mother, Renee Cancino.
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“We were ready to lose her, to be honest.”
But the Cancinos were thrilled when the tiny baby survived – and just as happy to learn that she didn’t have the heart defect after all.
Still, the Taylors couple had to deal with the fact that Valerie would never be able to walk.
But thanks to the efforts of her dad, JD Cancino, and some staff at Shriners Hospital for Children in Greenville, the tiny 2-year-old gets around quite well.
“We go everywhere and people are like, ‘Whoa! This little teeny girl is getting around,’ ” her mother said. “And she’s happy because she’s free and can run away from us like any 2-year-old would do.”
Little Valerie, who weighs just 15 pounds, suffers from caudal regression syndrome.
The condition, which occurs early in the developing fetus, affects the lower half of the body, from the spine and limbs to internal organs, according to the National Institutes of Health.
The range of symptoms vary, but the spine is typically undeveloped, the legs may be bent, and there may be abnormalities with the kidneys, bladder, bowel and large intestine as well.
Though the cause isn’t known, scientists believe a combination of genetic and environmental factors are responsible, according to the National Organization for Rare Disorders.
Caudal regression syndrome strikes one to five babies out of every 100,000 births, NORD reports, and affects boys and girls in equal numbers.
Valerie, who suffers from the most severe form of the syndrome, is missing more than half her spine, her mother said. Her legs are permanently in a bent position. And she has bladder, kidney and digestive tract issues that led to bladder surgery when she was just 8 months old.
But otherwise, she loves to play, speaks clearly and has no mental delays, her mother said.
“She has the strongest baby biceps I have ever seen because she uses her arms for everything,” she said with a chuckle. “She scoots around on the floor. She sits up. And she can do a handstand and a flip now.”
‘People to help’
The Cancinos learned of Valerie’s condition from an ultrasound at about 18 weeks gestation. They consulted with many doctors, resulting in a roller coaster of emotions and a variety of opinions. But most had never seen the condition.
Finally, a neurosurgeon referred them to Shriners in Greenville.
“They have dealt with children with this condition and gave us a good idea of what it would be like for Valerie as a little child, at school age, on up to adult,” she said. “And we knew it was something she could do and we could do. And there would be people to help.”
Though she scoots around on her hands at home, about a year ago it became clear that Valerie would need a wheelchair when she was out and about.
So someone at Shriners came up with a pediatric model called a Star Car because she was too small for a regular wheelchair.
The Star Car is a two-wheeled cart that is low to the ground, said Ed Skewes, a prosthetist-orthotist at Shriners.
Then Valerie’s father, a high school Spanish teacher, decided to make something himself that kind of mimicked the Star Car – a platform with wheels and a little foam seat on which she could propel herself, said Skewes.
“Her father came up with something really clever,” he said. “It was important for him to be part of his daughter’s life in helping her.”
And while she was able to get around in it, the alignment wasn’t optimal and it was a little too narrow so it would rub her arms, Skewes said. So he teamed up with Shriners occupational therapist Lisa Wagner and designed a new version.
“We took a cast of the Star Car and made a clear plastic seat section that we could put her into,” he said. “We’d have to adjust this, and Lisa let me know what angle she wanted it and what position on the cart.”
Next, he said, they used Plaster of Paris to make a mold, had the technicians put a foam liner and thermoplastic over it to form a seat, put Valerie in it, adjusted it and trimmed the edges allowing her to move in the way she needed.
Shriners and its prosthetics-orthotics department often custom designs equipment and devices for patients because what they really need isn’t made commercially, Skewes said.
This time, along with the Shriners staff, the effort included Valerie’s dad, Skewes said.
“The kids are my heroes. So many of them are not ambulatory and most of us can’t fathom what that would be like,” he said. “We’re here to help and will do anything we can to meet the needs, goals and objectives that they have.”
Valerie’s mom said the new design allows her little girl to grow and still be able to use her chair, which is important especially since insurance generally only covers one chair every five years and they’re hoping to be able to get a power chair in a couple of years.
“If we go somewhere, library classes, or even the church nursery, she doesn’t have to be so close to the ground. It gives her a lift. And she’s really enjoying it,” she said. “And that’s a huge blessing.”