Eighteen-year-old Alex Kulzer stands proud in front of the Johns Hopkins All Children’s Hospital logo at the hospital’s main entrance in St. Petersburg, Florida, surrounded by three handmade treasure chests and hundreds of presents and prizes for patients, a project he spearheaded and brought to fruition. He smiles big for a picture with his Boy Scout troop leaders, while staff who cared for him, including his neurosurgeon, Luis Rodriguez, M.D., and Child Life specialist, Renee Savic, B.S., CCLS, support this momentous occasion.

“This is more than a hospital to me. It was like a get-together with family,” Alex says. “I'm giving back to my community in a place that I grew up in. You never want to say, ‘I grew up in a hospital getting tests done,’ but I am happy that I'm giving back to them.”

The lifelong patient of the hospital was diagnosed at just 4 months old with hydrocephalus, a medical condition in which the fluid struggles to drain from the brain. He had his first surgery at just 9 months old. By 4 years old, he was also diagnosed with epilepsy and placed under the care of Ena Andrews, M.D. Since then, he has been in and out of the hospital, needing close monitoring for his seizures and undergoing six shunt operations, which help to drain the fluid in his brain.

“That is unfortunately what happens with shunts as the child grows. The body is trying to get rid of them,” Rodriguez says. “But Alex always had a great sense of humor. He would always be cracking jokes.”

Alex proves his leadership with his involvement with Boy Scouts. He had a big project to complete, so he worked closely with Savic on the Child Life team to bring his vision to life. He called it “Helping Heroes” and envisioned treasure chests with wheels that could be filled with toys to make the hospital stay for patients a little brighter — and give them an activity to keep busy.

It was a project that has been in the works since 2020, during the COVID-19 pandemic.

“This was a big roadblock in his project and the greatest achievement is his ambition to see it through,” Savic says. “We were in a world pandemic, something that I don't think any of us alive today had ever seen, and this young man who has spent his life through therapies, surgeries and hospital stays — he never gave up and he kept contact with the hospital.”

Part of Savic’s job is helping patients, former and current, work through opportunities to give back to the hospital.

“We spent a year together over the phone and even met in person at the hospital for several meetings to discuss this project. His ambition to complete this project was just phenomenal,” Savic says. “He called to make sure he was coating the treasure chest with the right coat so they could be cleaned with hospital cleaners. He wanted to make sure they were the right dimension and that they were safe for kids. It was just marvelous.”

The day of the donation dropoff was a full-circle moment. One his mom Karen was overjoyed to witness.

“It was a lot. It was very emotional,” Karen says. “It was very touching, and I’m super proud that he put so much thought and planning into it. It was a good moment to live.”

It was also touching for Rodriguez, Savic and other staff who have treated him and watched him grow.

“He struck me as if he was not only a leader, so I wasn’t surprised he wanted to do this project, but a protector. It’s been great to see how he changed and matured into an outstanding young man — and he still is so funny,” Rodriguez says.

“It was kind of hard for me not to tear up during the drop-off because it was just such an amazing job for a young man to keep pushing forward and work with people in his community to get these items together to fill these treasure boxes that he made,” Savic says.

Ena Andrews, M.D., is on the medical staff of Johns Hopkins All Children’s Hospital, Inc. (“JHACH”), but is an independent practitioner who is not an employee or agent of JHACH.