Schreiber Pediatric Center - Seeing the glass half full with Shelby Stroman

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May 26, 2017

Seeing the glass half full with Shelby Stroman

Posted by Dan  Permalink 

Steve Stroman said people are drawn to his daughter Shelby. Maybe it's her curious eyes and captivating smile. Maybe it's her fighting spirit. Whatever it is, there's no denying that you want to just hug her when you see her.

Deanna Adair, a Schreiber physical therapist, works with Shelby Stroman during a recent visit.

Shelby was born with numerous complications tied to having Aicardi syndrome, a rare genetic disorder that occurrs almost exclusively in females. The condition leads to difficult-to-control epilepsy, developmental delays and retinal defects.

Steve is the primary caregiver during the week, so he's the one we usually see here at Schreiber with Shelby. In his part-time work from home, he's an environmental and policy consultant for nonprofit advocacy groups. Mom Judie Howrylak is a physician and medical researcher at Penn State Health Milton S. Hershey Medical Center. They live in Manheim Township.

Steve said Shelby has been back and forth to Children's Hospital of Philadelphia several times to treat the severe epilepsy, most recently in early 2017.

"She had a very rough patch the past two months, but she seems to be recovering," Steve said in early May. "She's actually this sweet, very resilient warrior princess. It's amazing how strong she is. I think that's what makes her captivating to people."

The family started coming to Schreiber in March 2016 to receive all three types of therapy -- physical, occupational and speech.

In that time, Shelby has seen seven different therapists, both for home visits and here at the Center. Steve has been consistently impressed with all the therapists and their care.

Shelby works on an exercise ball to build her core strength.

"We're extremely pleased with the quality of the therapy and the concern and empathy of the staff," he said. "We've had a great experience.

"We've been very fortunate to get several pieces of home medical equipment, some of them very expensive. Kristie Schreoder took the lead in writing the order so that it could be paid for by insurance. It's not always easy to make that happen. You need a lot of competence and experience, which Kristie obviously has."

With all her different issues, improvement can be hard to see, let alone measure.

"We have goals and look for progress, but sometimes circumstances change when she has a setback," Steve said. Before her most recent setback, he said, "She was very close to being able to pull herself up into a sit. Now we're trying to rebuild her arm and leg strength."

He keeps his eye on the big picture, which he said is to maximize her developmental potential. What that means exactly nobody really knows.

"The life expectancy for what Shelby has is eight years," he said. "We're hoping to do everything we can to push the envelope as much as possible. There's a girl in Australia with Aicardi who sings and walks. The oldest surving person has lived to be in her 30s. We're hoping with improvements in drugs and treatment that Shelby can push those boundaries."

That might seem like a steep hill or long odds or whatever metaphor you might choose. Steve picked a different one as he watched Shelby prepare for another round of core work on a big blue exercise ball.

"We tend to see the glass half full."

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Does Shelby touch your heart? Should every child who needs our services be able to receive them? You can help make that happen. Just visit our DonateNow page here and set up a recurring gift. Just $10 a month will pay for one half-hour of therapy for one child like Shelby. Questions? Call the Financial Development Office at 717-393-0425 ext. 105.

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