Emily ready for next steps after intensive pediatric rehabilitation

Three-year-old Emily Everitt has spent her entire life navigating the effects of a rare genetic disorder.

Emily has CerTra Syndrome, a rare genetic disorder caused by a mutation in the CERT1 gene. According to Emily’s mom, Caitlin, she is one of only about 50 people in the entire world with this condition.

“It causes global developmental delays, epilepsy, digestive issues and sleep disturbances,” Caitlin said. “You are delayed in every way you can think of.”

‘Something was not quite right’

Doctors diagnosed Emily with the condition when she was just a few months old.

“We noticed something was not quite right at 5 months old,” Caitlin said. “She rolled right and then did not roll again. She was not meeting growth and motor milestones. We had her evaluated by Early Intervention at around 7 months old. She was delayed in every area.”

At that point, Emily began Early Intervention therapy and attended additional physical, occupational and speech therapy sessions.

However, Emily aged out of Early Intervention when she turned 3 years old.

“We knew she would have this long gap in services between Early Intervention and when she started the school year at the Intermediate Unit,” Caitlin said. “That’s when Early Intervention and her other therapists suggested Good Shepherd.”

Looking to rehabilitation for the ‘extra push’

Emily entered Good Shepherd’s Pediatric Intensive Rehabilitation Program, located at the Good Shepherd Rehabilitation Hospital Emily Howatt Pliskatt Pediatric Unit in Bethlehem, in July 2026.

During the inpatient program, overseen by Kimberly Kuchinski, MD, MPH, children receive intensive inpatient therapy and nursing care to address areas, such as gross and fine motor skills, daily living skills, feeding challenges, sensory needs, cognitive challenges or other areas based on the needs and goals of the child and their family.

“We were looking for that extra push to get her to the next milestone to get her more independence,” Caitlin said.

Emily’s goals included improving her feeding skills, sensory integration, developmental positioning and gait initiation and endurance (transitioning from a standing position to walking and walking longer distances).

“A big factor for us in choosing Good Shepherd was getting her to the Trexo robotic gait trainer,” Caitlin said. “They were the only ones that had the right size for Emily. She got to use it multiple times during her stay.”

Good Shepherd’s pediatric hospital is the only inpatient rehabilitation hospital in America to feature three sizes of Trexo robotic gait training technology.

Emily used both Trexo and traditional gait trainers during physical therapy. Additionally, pediatric feeding therapy helped Emily focus on her bottle skills and exploring different types of table foods.

“Her condition makes trying new foods difficult because of watching her ratios of fats and carbohydrates,” Caitlin said. “She also has a gag reflex, so they worked on that.”

Occupational therapists used therapy balls, vibration plates, swings and dynamic reaching exercises to work with Emily on developmental positioning and sensory integration.

“I really loved all of her therapists,” Caitlin said. “They did a great job communicating with each other to make sure Emily got exactly what she needed each day.”

The program was a “balancing act” for the whole family, Caitlin said. Her husband, Brendan, stayed with Emily at the hospital. Meanwhile, Caitlin stayed home in Alburtis with Emily’s 5-year-old brother, visiting Emily every day.

Recreational therapists also included her brother in sessions, encouraging ways they could participate as a family in play activities that included Emily.

“My son loved everyone there,” Caitlin said. “He never processed it was a hospital. He called it her therapy camp. It was a good experience for the whole family.”

‘She just did it’

The experience went so well, in fact, the family decided to extend Emily’s stay.

“We were originally going to discharge after two weeks, but she started doing so well that we added time on and ended up staying for 3 ½ weeks,” Caitlin said.

Over that time, Emily progressed in all areas.

She was able to improve her gait initiation and endurance in the Trexo device and transfer those skills to a traditional gait trainer, along with developing other motor skills.

“A couple of weeks after her discharge, she magically pushed herself up into a sitting position,” Caitlin said. “She had been working on it for a long time, and the brain connection woke up. She just did it.”

She also made considerable progress with her feeding skills.

“Before, Emily would only drink from a bottle if she was being held and carried around, so my husband had to do it,” Caitlin said. “Anyone can give her a bottle now, which we could not say before she was admitted to Good Shepherd. She can now sit upright in an activity chair to take her bottle.”

According to Caitlin, Emily is also more aware of her surroundings and her body and recognizes familiar people and voices.

Ready for what’s next

Emily went home to Lehigh County in August 2026, equipped for the next step of her journey.

This fall, she started at an Intermediate Unit a couple of days a week and has done very well with no problems, Caitlin said.

She also continues using the Trexo robotic gait trainer once a week in outpatient therapy at Good Shepherd Rehabilitation – Hyland Center on the South Allentown Campus.

“I would definitely recommend Good Shepherd,” Caitlin said. “It was a great place to figure out what’s next.”