For more than two frustrating years, Sundt Project Executive Bob Aniol and his wife were shuttled from doctor to doctor trying to find out what was happening to their young daughter, Caitlynn.
When Caitlynn started walking at 14 months old, she often fell. At her 18-month visit, Caitlynn’s pediatrician referred her to an orthopedic surgeon to address her parents’ concerns regarding her walking posture and tendency to fall. As time went on, she was also referred to multiple neurologists, a physical medicine and rehabilitation specialist, and a geneticist. They could all see the problem, but no one could offer a diagnosis or solution.
“It’s extremely stressful when you visit one specialist after another, only to be referred to someone else who does not know and you’re left to figure it out yourself,” Bob said.
Over the next two years, many diagnostic tests were run and the results were normal. The Aniols didn’t get answers until their daughter was 4 years old and the family was directed to the Texas Scottish Rite Hospital for Children in Dallas.
With one observation of Caitlynn’s walk, a Scottish Rite neurologist said she had Hereditary Spastic Paraplegia (HSP), a group of disorders characterized by progressive weakness and stiffness of the legs.
“The Scottish Rite Hospital is a collaborative working environment where in each visit a neurologist, orthopedist, physical therapist, occupational therapist and nurses see the child individually and then everyone meets with the parents at the same time for a group discussion,” Bob said.
A leading pediatric orthopedic center, Scottish Rite has treated more than 250,000 children since its inception and has more than 35,000 clinic visits each year. The hospital tailors treatment to the individual needs of each child and family.
Since their daughter’s care is considered research, Bob and his family aren’t allowed to pay for her treatment. Bob has given and raised money that, combined with grants from the Sundt Foundation, has added to more than $25,000 to assist the hospital’s HSP research efforts.
The hospital grounds are bright and welcoming. There’s a playground on campus and the staff plans .events that bring college and professional athletes to the hospital to visit with kids and sign autographs.
“The hospital is phenomenal,” Bob said. “They try to make it the happiest place they can.”
Caitlynn visits the hospital, five hours from the Aniols’ home in San Antonio, twice a year for four-hour appointments. She has spent time in the hospital’s Movement Science Laboratory, which uses motion-capture technology to determine how patients move and walk. The same technology is used for animated movies and video games.
“They videotape her every time she’s there,” Bob said. “They then go back to video history to see how she’s progressing.”
Now 16, Caitlynn uses a wheelchair to get around her high school’s large campus and when she needs to avoid getting knocked over in crowds. When she walks, she drags her toes, causing her to trip. Otherwise, she lives her life much like any other teenager.
“She loves music,” said Bob, whose other daughter, Carlie, is 13. “We have traveled the country going to concerts: One Direction, Taylor Swift, Selena Gomez.”
Caitlynn plans to go to college after she graduates high school in two years. Bob’s sister already lives in College Station, Texas, giving Caitlynn a good support system when she attends her parents’ alma mater.
“She does incredibly well in school,” Bob said. “She plans on going to Texas A&M like her mom and dad.”
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