Beckett Thrives in Pediatric Rehabilitation While Living With Rare Disease

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Shirley Ryan AbilityLab is recognizing Rare Disease Day by celebrating the wonderful progress Beckett W., age 5, has made in inpatient rehabilitation and DayRehab while living with acute necrotizing encephalopathy (ANE).

Beckett’s story highlights how pediatric rehabilitation can help children with rare diseases make great gains after experiencing significant setbacks due to illness.

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When Beckett was just 22 months old, his parents, Christine and Dave, thought at first that he was exhibiting typical signs of a virus or the flu. However, Beckett’s symptoms quickly became more serious. He required hospitalization as he experienced seizure-like symptoms and inflammation in his brain. He proceeded to become unresponsive and lost his physical function, speech, and gross and fine motor skills.

Beckett was diagnosed with ANE, a rare and serious condition in which a patient experiences encephalopathy, or a disturbance of brain function, often following a viral infection. In Beckett’s case, he has had two episodes in his young life — first at 22 months old and again at age 4.

After both episodes, Beckett required intensive physical, occupational and speech therapy, and his family turned to Shirley Ryan AbilityLab for inpatient rehabilitation.

First, as a toddler, Beckett spent two weeks as an inpatient. Through several hours of therapy a day, he was able to regain his ability to walk on his own, play with toys and lift himself up from a seated position. He also recovered his speech skills and all the words he had learned prior to the first ANE episode.

Beckett’s second episode at age 4 was more serious than the first. Even after stabilizing in the acute-care hospital, he only was able to move his right leg. He could barely open his mouth and required a nasogastric tube for short-term feeding support, and he was unable to communicate.

“For his second time in inpatient rehabilitation, we knew instantly we would go to Shirley Ryan AbilityLab,” said Dave. “I wanted him to be in the best hands.”

This time, Beckett spent nine weeks in inpatient care at Shirley Ryan AbilityLab — relearning to use his arms, feed himself and speak again.

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Following his last stay in inpatient care, Beckett transitioned to Shirley Ryan AbilityLab’s Burr Ridge Outpatient & DayRehab Center, where he undergoes rehabilitation two days a week. DayRehab allows Beckett to live at home with his family — including with his big sister, Mila — while still receiving the benefits of intensive therapy and building strength, endurance, coordination and communication skills.

“Beckett’s therapy is centered around helping him build strength and endurance so he can participate more fully in everyday activities and keep up with his peers,” said Christine.

“While he is not yet as agile as other children his age, he continues to gain strength and coordination each week.”

Beckett’s DayRehab goals have focused on helping him get “quicker and more confident on his feet.” In physical therapy, he is improving his walking and overall gait, climbing up and down stairs with little assistance, and even learning to jump.

In occupational therapy, Beckett works on fine motor skills, including writing, cutting with scissors and smaller hand-strengthening tasks, which will help him prepare for school — especially with kindergarten on the horizon.

Christine said Beckett is growing confidence when communicating, too. In speech therapy, he is making steady improvements on his respiratory control and regulated breathing, as, at times, he has choppy or slower speech patterns.

Through it all, Beckett’s therapists have incorporated fun into therapy — from teaching him how to ride an adaptive bike to celebrating Halloween at DayRehab with him dressed proudly in his astronaut costume.

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Once Beckett graduates from DayRehab, he will transition to outpatient therapy to maintain his strength. He also sees another specialist to receive monthly intravenous immunoglobulin (IVIG) infusions, which can help to boost the immune system and reduce inflammation. Also, Beckett’s family is diligent about illness prevention and germ exposure so as to reduce the risk of another serious episode and further hospitalization.

Though having a child with a rare disease brings a high degree of anxiety, Christine and Dave remain grateful for the progress Beckett has made and hopeful as ANE research continues to advance.

“We want Beckett to get the most out of life without keeping him in a huge bubble. We try to find the balance between living life and protecting him,” said Christine.

In the meantime, Beckett’s family is focused on the future.

“We are looking ahead with hope … taking a trip to Hawaii in the spring, enjoying summer fun, and preparing for kindergarten in the fall,” said Christine. “We want Beckett to know how loved he is. We are so proud of Beckett’s progress and can’t wait to see how far he will go.”