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When Caleb Z. was 13 years old, he and his family set out early one Friday morning to swim at a beach near their Florida home. Though this was only the second time that they went to the beach as a family, it was a day that would forever change their lives — and especially Caleb’s.
The following Wednesday, five days later: Caleb volunteered at the library, but then told his mom, Jesse, that he had a headache. His teenage appetite remained unchanged, and he still was able to eat two full plates of dinner.
The next morning: Caleb developed a fever.
Then came the weekend. He felt poorly Friday but, on Saturday, stated he felt a little better, ate breakfast and watched movies. However, by that evening, hallucinations began.
Jesse and her husband, Eric — who are both in the medical profession — knew they needed to get to a hospital right away. On the hour-long car ride, Caleb’s condition rapidly deteriorated.
“He could no longer speak — nothing he said made sense,” said Jesse. “By the time we got to the hospital, he could not walk out of the car.”
Naegleria Fowleri: A Rare & Mostly Fatal Condition
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Caleb was admitted to the pediatric intensive care unit (PICU). Doctors ran multiple tests, including a spinal tap and CT scan, to rule out conditions like meningitis, encephalitis or mosquito-borne illnesses, and Caleb started broad-spectrum antibiotics while the tests were underway.
Ultimately, Caleb was diagnosed with Naegleria fowleri, commonly referred to as a brain-eating amoeba, due to exposure to brackish water from swimming that day at the beach.
Naegleria fowleri is an extremely rare — and 99% fatal — condition, and so Caleb’s infectious disease doctor started him on an intense, 28-day course of medication while trying to stabilize his overall condition.
Caleb remained immobilized. By the next month, he had no corneal reflex, no gag reflex, no pain response, and he couldn’t wiggle a toe. Doctors performed a tracheostomy so that a ventilator could breathe for him. He underwent numerous blood transfusions, experienced acute renal failure, and received a gastrostomy tube for his nutrition.
Keep Doing the Next Best Thing
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Though his prognosis was dire, Jesse knew one very important thing about her son: Caleb never, ever quits. After 54 days in the PICU, he finally began to stabilize.
It was important for Caleb to begin rehabilitation after such a long period of immobilization, as he had gone from 144 to 112 pounds and lost significant muscle mass. Importantly, the amoeba had caused serious damage to Caleb’s brain tissue, and he needed to recover the cognitive and physical function he had lost as a result.
However, Caleb was not accepted into inpatient rehabilitation facilities in Florida due to his unresponsive state.
“I have three physical therapists in my family, and they all said I had to get Caleb to Shirley Ryan AbilityLab in Chicago,” said Jesse. “My husband and I said we just have to keep doing the next best thing for Caleb.”
Caleb Arrives in Chicago for Intensive Rehabilitation
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Caleb and his parents flew up to Chicago … and Jesse said it was “go go go go” from there.
Caleb’s interdisciplinary care team was led by Gadi Revivo, DO, Section Chief of Pediatric Rehabilitation Medicine at Shirley Ryan AbilityLab. Dr. Revivo and the team created a customized treatment plan for Caleb that included high-intensity physical therapy, occupational therapy and speech-language therapy.
They got to work the very next day in the hospital’s innovative Pediatric Lab, in which children and adolescent patients undergo intensive rehabilitation and benefit from access to state-of-the-art devices, technology and equipment.
Through it all, Jesse and Eric stayed at Caleb’s side and actively participated in his therapy sessions. Progress was slow at first, but they never gave up — and neither did Caleb.
Inchstones Lead to Milestones for Caleb
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Little by little, Caleb started to reach milestones at Shirley Ryan AbilityLab.
“When we first arrived, we had to reposition Caleb’s arms and his legs. He couldn’t move anything. We tickled his body with a feather with no reaction,” said Jesse. “But, my sister has always said, ‘inchstones lead to milestones,’ and that’s exactly what it was for Caleb.”
Jesse said there were many special moments and “firsts” for Caleb during his inpatient stay that they will carry as memories for the rest of their lives: tracking objects with his eyes, holding his head up for eight seconds, touching his fingers to his thumb on command, saying his first word, sitting up for 90 seconds without assistance on his 14th birthday — and even making gingerbread cookies over three different occupational therapy sessions.
“It took one session to mix the dough, one to roll the dough and cut out five cookies, and then a whole hour just to decorate a single cookie, but he did it and he never quit,” said Jesse.
As Caleb continued to make improvements in speech, muscle strength and mobility, he also participated in art therapy, music therapy and therapeutic recreation.
“His therapists knew he has a love of sports, and they catered to what would be most beneficial for him to get back to doing the things he loves,” said Jesse.
Building Skills while Bringing Joy & Fun to Therapy
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After 100 days in inpatient care, Caleb spent several more months in Shirley Ryan AbilityLab’s Streeterville DayRehab Center, located across the street from the flagship hospital. There, he continued to build on his skills in therapy as he prepared to transition back home.
For instance, he learned to pull himself up to standing position and walk with a walker. He also was able to speak in sentences and write. Throughout, he brought joy and fun to therapy sessions — whether trying out an adaptive bike, challenging his care team members to arm wrestling matches or leading a spontaneous dance.
Nearly a year after acquiring the amoeba, Caleb returned home. For Jesse, it was a special moment to reflect on how far he had come.
“At the beginning, Caleb would spend many hours on the treadmill, and I always felt badly for whoever had to move his legs because, at first, there was no movement from him,” said Jesse. “On the day we were discharged, he got to walk the track in the hallway using his walker, and it was the moment I had been waiting for.”
Caleb Returns to the Water
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Caleb, now 15, is back home in Florida, where he is walking with the use of a walker and spending time with his family and friends. He also is excelling academically.
He has not returned to playing his favorite sport — baseball — but he got to throw out the first pitch at a local baseball game. As a dedicated big brother, he enjoys watching his three siblings play ball and says, “If I can’t be on the field, I will be their number-one supporter.”
Caleb periodically comes back to Shirley Ryan AbilityLab for evaluation and high-intensity rehabilitation to ensure he is continuing to make progress in his recovery.
On a recent visit to Chicago, he achieved another big milestone: swimming in aquatic therapy — marking his first swim since the fateful day when he acquired the amoeba.
“I was pretty nervous because water was where he had gotten sick, but Caleb felt confident,” said Jesse. “In fact, he told me he could not live his life in fear.”
Jesse said that Caleb, with a big smile on his face, looked like any other 15-year-old in the water. As he continues to recover, Jesse said she is so proud of him and confident that he will continue to push himself. “Because Caleb never quits,” she said. “Caleb never quits.”
