- Associated Press - Monday, December 7, 2015

ODESSA, Texas (AP) - Aubree Dodd stopped using a walker just before her fourth birthday in May, but her path was a long one, spending about half her young life in comprehensive therapy at the Permian Basin Rehabilitation Center.

Aubree lives with a genetic mutation known as cardiofaciocutaneous syndrome, CFC for short. The condition affects only about 300 people worldwide, according to the United States National Library of Medicine.

The disorder weakened her heart, altered her face, diminished her eyesight and made her skin ultra-sensitive, her balance delicate and her moods volatile, her mother, Dana Dodd, and her caregivers at the rehab center said. The rare CFC even led to her curly hair.

But today, as a result of her ongoing help, the 4-year-old can walk unassisted. She speaks and plays.

“Whoa!” Aubree says as she toddles down the center’s hallway.

“That was my main focus,” Dana Dodd told the Odessa American (https://bit.ly/1Sy4xUb). “I wanted my daughter to walk.”

After Aubree learned to walk, the bar kept rising.

Aubree seemed like a perfectly healthy baby when she was born, after Dana Dodd carried her for a full term, the mother recalls. But Dana Dodd says her baby, who is her fourth, started missing milestones - not “thriving” as it’s called when infants rapidly gain weight, not crawling after her first birthday.

Oftentimes, the disease occurs in people with no history of the disorder in their family.

“My fourth kid, I was thinking ‘I’m going to be a pro at this,’” said Dana Dodd, 33. “But life throws you a curve, and you learn so much.”

The rare condition puzzled doctors, Dana Dodd said, and she didn’t learn her daughter’s diagnosis until September of last year. By then, even as Aubree sought specialized care at Cook Children’s Medical Center in Fort Worth, she had already been going to the rehab center for a year. Today, she goes twice a week.

As a toddler, Aubree’s mother and therapists say she would ball her hands to avoid the overwhelming sensations of the world surrounding her. She cried, more than usual.

“She avoided anything - no ground, no food, no table, nothing,” Qwenetra “Gwen” Carter, a physical therapist who treats Aubree, said during a recent session. “… We used to have to see her in a room with no one. She was afraid of people. Sensorially, she could not have handled this environment.”

Carter first worked to help Aubree become comfortable touching cotton balls. She began having people walk through the isolated room where they had to treat her. The process was slow.

But on a recent visit, Aubree squealed with excitement as she threw a miniature basketball. She jumped - with help from physical therapy assistant Amy Burks - on a little trampoline. And she swung on a swing, still sometimes breaking into tears, in an exercise meant to boost her confidence and improve her tolerance and balance, Burks said

“They’ve helped her do everything,” Dana Dodd said.

In another room for another session, Aubree popped bubbles out of the air blown by John Trotman, the occupational therapy assistant who is working on her fine motor skills. Aubree strung beads and buttoned buttons.

“She’s made a lot of progress,” Trotman said. But in the early years of life, as youngsters soak up the world, growth comes quickly. And delays in her development create more and more challenges catching up, Trotman said.

But another sign of progress and source for optimism is that Aubree goes to school now with other special needs children.

Dana Dodd said she isn’t sure how CFC will affect Aubree by the time she reaches adulthood.

“I see a good future ahead of her, especially with the help of y’all,” she told caregivers at the rehab center, during a recent appointment.

Those caregivers, inspired by Aubree’s progress and infatuated with her spirit, named Aubree this year’s Permian Basin Rehabilitation Center Poster Child. She will be the case study for the work of the rehab center, services few others provide in the Permian Basin. Her face will appear on brochures and, if the rehab center’s campaign is successful, her story will help raise money for an organization that depends on it.

And last week, Aubree lit the Christmas tree at the Pilot Club of Odessa’s annual celebration at Optimist Park.

“She’s the voice of our patients,” said Kathy Hollman, director of clinical development and marketing at the rehab center. “I think she’s like a little ray of sunshine has lots of potential.”

When her last session ended on this recent afternoon, Aubree walked down the hall, a familiar place where she didn’t need to reach for her mother’s helping hand all the way to the parking lot outside.

“Thank you!” Aubree beamed. “Bye!”


Information from: Odessa American, https://www.oaoa.com

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