Relentless Hope: Brandon's Story

[Shriners Children's logo]

[Brandon, International Patient Ambassador]

To be brave means not only the quintessential definition of one man standing against 100, but doing the right thing even when no one is watching, not being afraid to do what you know is right, and being able to share your faith.

[Kathleen, Brandon's Mother]

Brandon was a healthy, active 6-year-old boy. In fact, he had just finished playing his last baseball game of the season, and we had noticed he had a little dribble—maybe the start of a cold or something.

By Tuesday, his teacher mentioned that he had a really bad headache. Wednesday he woke up with a fever, so of course, we kept him home from school that day. By Thursday, things were just progressing. You could tell he just wasn’t feeling great.

Saturday morning, Brandon woke up, and I was downstairs. We heard a loud dump.

[Brian, Brandon's Father]

I ran up to his room and he told me he couldn’t move his arm and he couldn’t move his leg. I scooped him up. At that point, we did take him, and I remember carrying him into the emergency room and telling them what was going on—just a complete feeling of helplessness.

[Kathleen]

I just remember being worried that he wouldn’t make it or something. Just praying that God would leave him here with us.

[Dan A. Zlotolow, M.D., Pediatric Orthopaedic Surgeon at Shriners Children's Philadelphia]

Acute flaccid myelitis is what he has—or we call it AFM—and it’s basically the new polio. It was 2014 when AFM really made its debut. Brandon, he was part of the second year of acute flaccid myelitis cases that we saw in the U.S.

[Keith K. Gettys MD, Pediatric Orthopaedic Surgeon at Shriners Children's Greenville]

Acute flaccid myelitis can mean that you have some weakness and you lose the ability of some of your nerves to work. It primarily affected his lower extremities and his one arm, and he’s received lots of treatment for that—at various Shriners along the way, lots of therapy.

[Brandon]

We were looking for an everyday, in-and-out therapy that is good, solid, and helpful. We found Shriners. We went for a visit to see if they could do anything. It was exactly what I needed.

[Kathleen]

He started going to therapy there pretty much every day for PT and OT. They did a really great job of setting goals with certain things he had to do, but then they would reward it with something else.

[Brandon]

The hardest thing I’ve ever done was learning to walk again—not only physically, but also mentally. It was one of the hardest, most rewarding things, realizing that I can be normal, and I can have an opportunity at a life like everybody else, and not have to be wheelchair-bound. As a six-year-old, it was a really, really big thing to be able to just even do something as simple as walk.

[Brian]

One of the OTs shared with us some of the new developments that Dr. Z and Dr. Kozin were working on at Shriners in Philadelphia

[Kathleen]

Basically a nerve transfer procedure. They take nerves that are functioning and reconnect them to muscles that are not.

[Brian]

After the surgery was over, that first time when they were able to see the nerve fire just a little bit in his arm—I remember so much excitement. Kathleen called me at work to say they saw a fire.

[Brandon]

Before the surgery, I had zero function in my arm, and I couldn’t do anything with it. I can now do a bicep curl, and I can function and eat almost like normal.

[Dan A. Zlotolow, M.D.]

Brandon, I think, is a pretty special kid. He is a very strong, very compassionate child who is mature way beyond his years. I think Shriners occupies a very special place in the medical system in that we can do things that other hospitals can’t. I don’t think it’s any coincidence that we have become the center for acute flaccid myelitis in the world.

It just shows you how, if you have the right resources, you can tackle really difficult problems that other people are not able to tackle.

[Brandon]

The difference between Shriners and a normal, run-of-the-mill medical facility is the feeling of home that you get. I’ve never been anywhere that I feel the same way I do at Shriners. Everybody knows you. Everybody is doing their absolute best to make sure that you get what you need, and that is one of the greatest feelings.

[Kathleen]

I think just beyond the initial medical component of it even, there was so much attention to the detail of how do we care for all of the child, not just whatever is wrong with their legs. It’s just been a massive, massive blessing to our family.

When I think of the future for Brandon, clearly I get teary. I just think anything is possible for him. He’s very determined and driven and just so happy.

[Brandon]

Giving back as an international patient ambassador means so much to me because of everything that has been done for me. I wouldn’t be able to use my right arm. I wouldn’t be able to walk if it weren’t for Shriners. I am so grateful for that, and I want to be able to provide that opportunity for every kid that needs it.