Five months after opening, 600 children from 41 states regularly travel to a building painted in “can’t miss” shades of red, orange, and purple on San Antonio’s Northeast side next door to Morgan’s Wonderland. Inside they receive a wide variety of therapies-disguised-as-play in rooms filled with sunlight, bright colors, and loving professionals. Families are billed based on their ability to pay and 100% free care is offered to those in need.
“It’s about the patient, not about the money,” said Ricardo Guzman Hefferan, managing director of CRIT USA, the Children’s Rehabilitation Institute of TeletónUSA, speaking to reporters during a media tour of the facility on Wednesday.
We met 10-year-old Andy Sosa, in town for two weeks of intensive therapy before heading back home to Union City, N.J. Andy was diagnosed with cerebral palsy shortly after his premature birth. Though his body is confined to a wheelchair, his mind is wide open and his joy is contagious.
“Everybody loves me just the way I am,” he said, matter-of-factly. “I’m way stronger than I was before. A dream I’ve always had is to be able stand up all on my own, without any help.”
To help achieve that goal, Andy practices a walking motion using a robot-driven device, the Hocoma Lokomat. While suspended over a treadmill, Andy is fitted with an exoskeleton set of legs strapped to his own. Computer controlled motors synchronized to the speed of the treadmill move his legs in a way that mimics natural walking.
Andy’s mom, Digna Morello Sosa and her husband are so pleased with Andy’s progress that they’ve decided to relocate from New Jersey.
“We come here every five months for two weeks,” Sosa said, a schedule dictated by their jobs and Andy’s schooling. “It’s a very hard decision (to relocate) but we’ve got to do what is best for him now.”
The nonprofit rehabilitation center treats patients from newborns to age 18 who have disorders or injuries of the nerves, muscles, or bones, including cerebral palsy, muscular dystrophy, and injuries to the brain and spinal cord. Children usually receive 80 to 100 services a year. For families who live outside Texas and cannot come for regular treatment, CRIT asks for a commitment of at least eight weeks a year.
“We have a family here from California who is staying in San Antonio for a month of intensive therapy,” says Hefferan. “They’ll go back home for five months and then return again for another month.”
CRIT USA opened in October last year and is an extension of the Teletón Foundation in Mexico, which operates 21 CRITs in that country. Its San Antonio facility is the first one in the United States. Teletón, Spanish for telethon, is funded by 26-hour broadcasts that started in 1997 on 70 networks and now air on 500. Hefferan says CRIT USA plans to pursue a more aggressive marketing plan to cover annual operating expenses and to open more centers in the U.S. The San Antonio center is booked to capacity, and there are 600 families on a waiting list, and the facility is only six months old.
CRIT’s approach to treatment is family-centered. The patient’s parents, siblings, and grandparents regularly sit down in the same room with the medical team to discuss treatment.
“Everyone in the room is focused on the care of this one patient,” explains Ellie Leeper, public relations manager. “There’s a 90-minute evaluation. We discuss realistic goals and family dynamics. With everyone in the same room at the same time, they come up with common solutions. Parents come in with strong hopes for their children, but some things physically can never be possible. It’s a matter of managing expectations and supporting the family to accept the outcome of the discussion.”
Medical teams include pediatricians and specialists in neurology and physical medicine and rehabilitation, a registered dietician, physical therapists, occupational therapists, respiratory therapists, speech and language pathologists, psychologists, social workers, rehabilitation engineers, and nurses.
“This environment is like a dream come true,” says Dr. Ellen Leonard, a pediatric specialist in physical medicine and rehabilitation. “If I need a nurse or a neurologist to see my patient, I can just walk down the hall and say, ‘Can you come see this child for a minute?’ We are all a team. There’s not any hierarchy. It’s all about what’s best for that individual child and that family.”
Leeper finds the environment equally rewarding. “It feels good to give families results and see their dreams coming true,” she says. “Being in the business of doing that is a very happy thing.”
*Featured/top image: Four-year-old Samantha Haney enjoys the hydrotherapy pool and the attentions of physical therapist Belinda Flores. Born with a condition commonly known as “brittle bones,” Sammi will undergo surgery number five in April to place steel rods inside the long bones in her arms and legs. Photo by Karen Stamm.