2019 was a big year for Ethan Ellis: he got a new heart, and he designed a Nike sneaker.

Ethan was born with a congenital heart defect called hypoplastic left heart syndrome. He underwent three staged surgeries and two heart valve surgeries at OHSU Doernbecher Children’s Hospital, but ultimately needed a heart transplant, which he received at Seattle Children’s Hospital.

That same year, Ethan was selected for the Doernbecher Freestyle program, a one-of-a-kind collaboration between OHSU Doernbecher and Nike in which OHSU Doernbecher patient-designers create Nike sneakers, apparel and equipment. Since its inception in 2003, the program has raised more than $27 million to support high-quality clinical care and innovative scientific research and to train future health care professionals.

Fans and “sneakerheads” around the world will remember Ethan’s iconic Air Jordan 14 Retro sneaker design, which is a tribute to the game he loves – basketball – and the people and places that were a part of his health journey. They might also remember the word he used to describe the sneakers: FIRE.

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Doernbecher Freestyle is returning to the (virtual) stage Feb. 25 at 6 p.m. PST to celebrate 17 years of the program. To mark the occasion, we caught up with Ethan, who is now 17, to reflect on his Doernbecher Freestyle experience and learn how it continues to shape who he is today.

Since designing his own shoe, Ethan has become a self-described sneakerhead and is collecting – no surprise here – Air Jordans. He even wrote an English essay on the history of sneaker culture (more on that later).

Ethan reports that he has not had a haircut since quarantine began. He’s working hard to recover some of the school credits he missed during his hospital admissions, and he hopes to get his driver’s license – which his grandpa has been helping him prepare for – in May.

Health wise, Ethan’s clinic visits have been perfect and he shows no signs of transplant rejection.

“My health is great,” he said. “I’m still taking eight meds twice a day.”

When asked about his favorite part of the Doernbecher Freestyle program, Ethan said it had to be the night of the Doernbecher Freestyle collection reveal and auction, when he was presented his designs to a live audience – and was surprised with a pair of alternate Air Jordan 14s that the Nike team made to complement his pair.

“Holding them up for Doernbecher and the Nike team to see was my best memory – it felt so good,” he said. “I’m grateful for everything they did for me.”

Ethan has written about his Doernbecher Freestyle experience for multiple school assignments, including a brand management project for a sports management class, and an English research essay titled, “The History of Sneaker Culture.”

Here are a few excerpts from that A+ paper:

“The program has put ‘Doernbecher’ into the vocabulary of sneakerheads worldwide. The release of these patient designed sneakers every fall carries just as much weight as any other Nike shoe release throughout the year. There is always a buzz and hype to these special shoes and the fact that kids with stories behind them have designed the shoes adds proof to the hype.”

“Today every sneaker has a story. Every sneaker is a work of art.”