Silly. Ornery. A joy. These are some of the words that Honey Torretti uses to describe her son CJ (Christopher Joseph), who turns six in May. By most accounts, he's a typical kid. He enjoys bowling, watching sports, playing with cars, and goofing around with his big sister Faith. His best friend is his cat, which he named Meatball. "To say he's unbelievable…it's totally true," Torretti says as she explains that CJ, who has cerebral palsy, was diagnosed at 38 days of life with having had a "moderate to massive" stroke. After physicians had diagnosed CJ's stroke, they also learned that he had suffered a "large heart attack, which attributed to his hypoxic and emergent birth," Toretti says, and likely caused the left-sided intercerebral stroke. "He was on life support for the first two-and-a-half weeks of his life, and we almost lost him about three times. He's recovered insanely well."
Toretti often refers to her son as a "miracle boy," but she explains that he also lives with certain setbacks. In addition to experiencing speech delays, "he doesn't run as fast as everybody else [or]…run up and down stairs, but he will go outside, he'll play…," she says. "He overcame his fear [of the swing set] and [now]…he climbs up and down the ladder to get to the slide….
"He's a cautious little boy and for good reason," she continues. "[When]…learning to walk, CJ chipped several teeth from falls and almost broke his nose a year or so ago when he fell face first into a wood table."
In the beginning, Toretti admits that she and her husband Chris were overprotective of CJ, but they have since eased that impulse because kids are kids—they fall down, pick themselves up, and get over their fears, and CJ is no exception. She adds that watching CJ surpass the functional expectations that his healthcare team had laid out for him has also helped to ease their attitude. "It's like he's thinking…‘I'm going to prove you all wrong,'" she says of the son who physicians initially thought would live life completely incapacitated.
While CJ does many of the same things any typical child would do, Toretti says that his schedule is anything but typical. With nine therapy sessions every week, participation in a special-needs bowling league, an occasional play date with buddies, and pre-kindergarten classes—four afternoons in a developmental-delay program and three mornings in a standard program—she says, "He's quite a busy kid."
Torretti and Chris also provide home therapy for CJ and credit these early interventions, which began when CJ was three months old, along with a talented rehabilitation team, for their son's progress. The "100 percent amazing" team the Torrettis assembled includes, among others, Sabrina E. Smith, MD, PhD, a pediatric neurologist with The Children's Hospital of Philadelphia (CHOP), Pennsylvania, and assistant professor of neurology and pediatrics, University of Pennsylvania School of Medicine (Penn Medicine), Philadelphia; B. David Horn, MD, an attending surgeon with CHOP and assistant professor of orthopedic surgery with Penn Medicine; Cindy Machiarelli, PT, and Sandy Schmieg, MS, OTR/L, both with the CHOP-Springfield satellite office; John Izak, CPO, co-owner of Philadelphia, Pennsylvania-based Orthologix; and interim therapist Nancy Ryan, DPT. These team members coordinate CJ's care, record his achievements, note his setbacks, and consult with one another, Torretti says. "Two heads are better than one, [and] three, four, or five heads…are [even] better...."
Torretti explains that because of his stroke, CJ was so unaware of his right side that he couldn't grip with his right hand or kick with his right foot, and he suffered from such severe facial droop that when bottle-fed, about half of the formula would dribble out of the right side of his mouth. Thanks to occupational therapy and oral motor exercises, he was able to begin eating pureed foods at the age of 11 months, but he still had a lot of gagging and choking issues. "Then, as time progressed so did CJ, and he was able to eat solid food…." The physical and occupational therapists work with CJ on arm-strengthening therapies that include stretches, weight bearing activities, and electrical stimulation, and they provide appropriate bracing, Torretti says, while Izak, who has been working with CJ since he was nine months old, provides lower-limb orthotic solutions.
"John guides us…and answers batteries of questions," she says. "He is the guru of orthotics!"
CJ's first set of orthoses were MAFOs—the right orthosis extended to the back of his knee, and the left one was ankle-high. The orthoses were designed to help build up CJ's leg muscles and provide stability because at that point he couldn't stand or walk independently. "We had a couple series of the MAFOs as he grew," Torretti says. "From there, John would…[modify them], whether it was a different way of strapping, loosening one, or using an elastic band on the other" to accommodate changes in CJ's muscle tone and strength. With the double MAFOs, CJ began to improve. Torretti says he took his first steps at 19 months with the assistance of a Rifton Gait Trainer (Rifton, New York), and he then progressed to a Kaye Reverse Walker (Kaye Products, Hillsborough, North Carolina). About eight months after that, he progressed to a shovel-handle quad cane. "Then one miraculous day, just…shy of this third birthday," Toretti says, "he walked independently…!"
Izak says that CJ's orthosis designs progressed as well. His left orthosis was downgraded to an ankle-high SureStep (South Bend, Indiana), and in keeping with his love of cars, CJ selected the "Traffic Soup" pattern—a colorful print that includes, among other things, blue sports cars, yellow school buses, and green helicopters. He is "doing very well with it," Torretti says. About a year ago, Izak recommended that CJ's right orthosis be changed to a DAFO Tami2 (Cascade Dafo, Ferndale, Washington). The challenge was to allow him to have some freedom, Izak says, adding that CJ was fitted with an articulating model because his hips were stable.
"It was the most exciting thing we'd ever seen," Torretti says about the DAFO. CJ "started into a hurried walk. He was almost running—almost running."
CJ continues to improve by leaps and bounds.
Two months ago, Izak and colleague Davin Heyd, CO, Bracemasters, New Berlin, Wisconsin, fit CJ with a dynamic response AFO (DRAFO). Heyd led the product development for the DRAFO, a fairly new type of orthosis that Torretti describes as being made of softer material than the hard orthoplast used to fabricate CJ's previous AFOs. Izak says he recommended the non-articulating, open-heel-design orthosis to relieve some postural instability that CJ was experiencing with the DAFO. The DRAFO has enabled CJ to begin to push-off with his ankle and jump. "We've been working on the [push-off and jumping] for the past two years, and we're finally seeing it," Torretti marvels. "CJ's now able to feel the impact on his heel…and he can move his toes on the right foot…. He's never been able to isolate them and do that before…!"
Izak explains that they introduced the DRAFO to try "to mimic that normal, natural gait pattern which CJ demands, but we're trying to keep his higher muscle tone from triggering…postural instability where he would get tight…," he says, adding that CJ has adapted nicely to the DRAFO. "CJ looks better…. He has been running and jumping…. So we're very excited about outcomes."
Torretti says that CJ's rehabilitation team has become a part of their family, and, in the end, it all comes down to family, teamwork, and attitude. "You can tell there's a huge love for John and all of the [rehabilitation team members] in CJ's life," Torretti says. "There's a lot of trials that we've been through. We almost lost our house several times because I couldn't go back to work [after CJ was born]. But at the end of the day, seeing his progression, I would live in a cardboard box. He's unbelievable."
Laura Hochnadel can be reached at