Every six months, 7-year-old Emanuel “Manny” Aguelles Silva and his mother, Yeseña Silva, make the nearly 1,000-mile trip to San Antonio from their home in Mesa, Arizona, for two weeks of intensive physical therapy – with transformative results.
Manny has cerebral palsy, a neurological disorder that affects coordination and muscle movement. He was 3 years old when he first began treatment at the Children’s Rehabilitation Institute of Teleton USA (CRIT USA), the first pediatric rehabilitation clinic in the nation to offer comprehensive medical and mental health treatment to children with neurological and musculoskeletal disabilities, regardless of ability to pay.
“The first year [Manny] was [at CRIT USA] I had to bring him in a wheelchair and he had to be carried most of the time,” Silva said. “With physical therapy he began to improve, and went from using a walker” to now walking on his own.
The Silvas are one of 500 families who come from as far away as New York to visit the specialty clinic located in Northeast San Antonio, said Federica Soriano, the clinic’s CEO. Having physical therapists, psychologists and counselors, nutritionists, and pediatric neurologists under one roof allows for a multidisciplinary approach to treatment, Soriano said.
CRIT USA opened its doors in San Antonio in October 2014, becoming the organization’s first U.S.-based location. The nonprofit institute started in Mexico in 1999 and has a network of 22 treatment centers there. CRIT facilities are constructed and sustained by donations received during Teletón, an annual 24-hour fundraiser supporting disability awareness and treatment.
“Half of the children we are serving in San Antonio are not from San Antonio or from Texas, they are coming to us from 48 different states,” Soriano said. “When you have a family coming three or four times a year, all the way from California or New York, to stay a year to stay for a week or more at a time, you can imagine that’s a great sacrifice. It’s very stressful, its economically hard, and if you decide to do it, it is because it is making a difference in your life and you aren’t able to find something closer to home.”
The 45,000-square-foot facility is a sensory oasis: Brightly colored floors and hallways engage and stimulate the brains of children with spinal cord injuries, mild to severe cerebral palsy, skeletal disorders, and congenital and genetic diseases. The specialists work with their patients to improve speech, coordination, fine motor skills, strength, and mobility through aquatic and physical therapy and the use of ultra-modern robotic machines that improve and encourage proper movement.
CRIT USA serves 500 patients and has a full 1,500-person waiting list; families can remain on the list anywhere from several months to several years before being admitted. “The waitlist has always been full,” Soriano said.
While the cost of caring for an individual with a neurological or musculoskeletal disability varies per person, the CDC has estimated that the lifetime cost to care for a person with cerebral palsy is nearly $1 million, with annual medical costs significantly higher than for children without cerebral palsy or another intellectual disability ($43,338 versus $1,674).
Here, however, families receiving treatment are typically responsible for just one percent of the $15,000 per year it costs to treat them, Soriano said.
During one of Manny’s physical therapy sessions, he was harnessed into the Lokomat, a robotic treadmill that supports his body weight while his legs are attached to robotic legs that assist with function and range of motion. Physical therapists drew marks on the treadmill belt representing ants for Manny to smash as he walked, encouraging him to shift his feet to hit the mark and land with his heel first. He laughed and smiled as he worked.
When Manny first began treatment at age 3, he would come every two months for one week, then every six months for two weeks. The family stays at one of San Antonio’s three Ronald McDonald House locations, which offer free temporary housing for children receiving medical treatment and their families.
Manny’s therapy schedule is intense, physical therapist Mari Jo Guerra said. He gets therapy in the gym five times a week and in the pool three times a week, while using the Lokomat up to three times a week, all in a two-week span. The family also receives counseling and education on topics such as nutrition and the importance of therapeutic in-home exercises.
Maria Cerna is a CRIT USA volunteer who helps run the Thursday support group for family members of children with disabilities, covering topics like stress management, self-esteem, grief and loss, with the purpose to connect and learn from others’ experiences.
“When you have a child with special needs, it’s difficult to have balance between taking care of their needs and taking care of your own,” Cerna said. “One of my goals when I come here is to convince parents that they have to think of themselves.”
Soriano said that the organization hopes to continue to extend its reach by expanding fundraising efforts and more recently by accepting health insurance, including Medicaid and Medicare, to cover the cost of services.
“We have patients coming from each and every state, so we know the necessity is all over the U.S.,” Soriano said.