Jump Start Program Is “Life-Changing” for Rylie

At 6 months old, Rylie Maginn was diagnosed with Pitt-Hopkins syndrome, a rare genetic disorder that results in developmental delays. In Rylie’s particular case, she is nonverbal and unable to walk on her own.

Seeking new ways to enhance 11-year-old Rylie’s quality of life, her parents chose Good Shepherd Pediatrics for help.

“We’ve always had it in the back of our head that Good Shepherd Pediatrics would be a place that Rylie would need to go,” said Rylie’s mom, Heather, noting they were impressed with the pediatric rehabilitation technology, including the Trexo Plus robotic exoskeleton and ZeroG® Gait and Balance System.

After starting outpatient physical therapy at the Health & Technology Center in Allentown, the family learned more about Good Shepherd’s Jump Start Program, which offers a medical “tune-up” for children with chronic illness or those who have regressed due to long-term complications. Jump Start provides a short, intensive burst of inpatient rehabilitation.

“Rylie was having some progress in outpatient physical therapy and we said, ‘You know what, let’s do an evaluation for the Jump Start Program,’ ” Heather said.

After meeting with Kimberly Kuchinski, MD, MPH, FAAPMR, and team members from physical, occupational and speech therapies, Rylie was admitted to the Good Shepherd Rehabilitation Hospital Pediatric Unit in Bethlehem earlier this summer to begin Jump Start.

“I was a nervous wreck,” Heather said. “She’s 11, she’s non-verbal and doesn’t walk independently. I was terrified. I’d never done something like this. I don’t know if we’ve ever spent time apart.”

But, Heather noted, Jump Start would greatly benefit Rylie.

Heather stayed with Rylie the first night. The next morning, Rylie began her three-week program with physical, occupational and speech therapy, and Heather’s initial fears disappeared.

“You quickly learn that everyone at Good Shepherd is so caring,” Heather said. “It eases parents’ anxiety.”

Rylie thrives on repetition, Heather said, and she received just that during her inpatient stay. Toward the end of her three weeks, Rylie could walk on the treadmill for 30 minutes straight, a major accomplishment for a young girl who previously could not walk independently.

“They really made use of every second she was in there,” Heather said. “The repetition is how Rylie learns.”

Given a boost by the inpatient program, Rylie now maintains a weekly program of outpatient physical, occupational and speech therapy with Good Shepherd Pediatrics. In addition to improved mobility, Rylie’s learning to better communicate through assistive technology on a tablet and to determine which words best describe how she’s feeling or what she needs.

Rylie’s moving all around the Maginns’ home with her walker, as her younger siblings cheer on her progress. Rylie is standing independently and has started taking some of her own steps toward mom and dad, too — something that was nearly unthinkable a year ago.

“It is nice that she’s starting to put the pieces together. Those pieces are from all the therapy and technology that she’s getting,” Heather said. “It’s life-changing.”

To request an appointment with Good Shepherd Pediatrics or to learn more about how the Jump Start Program can help your child, contact us online or call 1-888-44-REHAB.