Johns Hopkins All Children's Foundation

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Journey of Joy


Posted on Jun 09, 2022

Hailey walked across the stage at her graduation with the help of her physical therapists.
Hailey walked across the stage at her graduation with the help of her physical therapists.

The crowd murmurs as they sense something unexpected might happen. Hailey’s wheelchair moves into position at the edge of the high school graduation stage.

Suddenly, she rises, and with a Johns Hopkins All Children’s Hospital physical therapist on each arm, Hailey steps forward. She covers a short distance, but it has been a long journey to walk the stage.

"When she stood and took her first steps, the crowd just erupted,” Hailey’s mother, Robin, says of the Lennard High School graduation ceremony in May at the Florida State Fairgrounds near Tampa. “Those around us stood for her and the entire stadium kind of came together to celebrate such a big win for a student they probably didn't know. It was a really beautiful moment and reminded me, yet again, that there is still so much human kindness out there.”

“Hailey is the most committed patient I have ever worked with in my 10 years as a therapist,” says Nick Hamilton, who also escorted Hailey. “I would describe it as ferocious.”

To be sure, Hailey still has a long road ahead, but her trip across the stage was a journey of joy.

An Emergency

On a June 2021 night, Hailey came home like any other. She and her mom had some coffee ice cream and talked about Hailey’s summer job. Eventually, she went to bed. At 1 a.m., Hailey’s sister Natalie discovered her crying and went to awaken their mother. Robin looked at Hailey and grew concerned. She called 9-1-1.

Hailey, who had no previous medical conditions, was taken to a local trauma center where they discovered a spontaneous brain bleed. At another hospital a few days later, they did a surgical procedure and clamped an aneurysm. Hailey had lost all mobility, speech and cognitive ability.

After 12 weeks, Hailey transferred in August to the Kennedy Krieger Institute in Baltimore, a non-profit institution affiliated with Johns Hopkins that specializes in care and research focused on pediatric developmental disabilities and disorders of the brain, spinal cord and musculoskeletal system. In Baltimore, fluid began to build on Hailey’s brain and she received surgical care at The Johns Hopkins Hospital before returning to Kennedy Krieger. In November, she returned home and began receiving care four days a week at Johns Hopkins All Children’s.

A Motivator

The idea came up at what Lisenbee likes to call “Wacky Wednesday.”

It’s a weekly appointment where Hailey does combination therapy with Lisenbee and occupational therapist Jackie Reitmayr, OTR/L. Creative energy is high, the ideas flow, anything seems possible.

Robin mentioned that Hailey would get to graduate with her class, lamenting that she wouldn’t actually be able to walk the stage.

Lisenbee and Hamilton confirmed with Hailey that she wanted to put in the work to walk at graduation. She was in.

“We put it out into the air, so now it's going to happen,” Lisenbee says.

Commitment

Hailey works hard.

She comes for therapy four days a week, often for several hours with speech, physical and occupational therapy. She might spend two hours in a physical therapy session, often in combination with occupational therapy. They may work on getting off the floor and into her wheelchair, or they may take a movement or functional task and break it down into pieces. They will work to master each small piece and then string together those small pieces like a puzzle to achieve a larger goal.

“Hailey and her family are like a freight train,” says Hamilton, who has worked for the hospital for seven years. “They are here every day. Her graduation was the first time they have ever cancelled an appointment as far as I know, and even then, her therapists showed up to make her work!” 

But the work can be frustrating. Progress is slow. Still, Hailey pushes through. Having a clear goal helped her dig deep.

“I think that was definitely like a huge motivator for her on those longer days where she was like, I'm exhausted,” says Lisenbee, who started shadowing physical therapists at the hospital in college and will complete her third year as a full-time employee this fall. “I don't really want to do any of this.

“She has an amazing support system. That, coupled with the fact she was motivated about doing something, has really gotten her through some of those sticking points.”

Robin credits the whole therapy team — physical, occupational and speech — at Johns Hopkins All Children’s with giving Hailey “her life back.”

The therapists turn the credit back to Hailey.

“We only gave her the tools,” Lisenbee says. “She did everything. She did the hard work. She really put in every ounce of effort that she could have possibly done, which has been awesome to watch.”