At 3-months-old, Clay Beabout had open heart surgery to repair the large holes stamped through his heart before birth. This would be his first in a series of 45 surgeries over the next 16 years.

Born with VACTERL Syndrome or VATER, an acronym standing for vertebral, anal, cardiac, tracheal/esophogial, renal (kidneys) and limbs, Clay, junior, has a lengthy medical history. Of the seven areas possibly affected by the disease, Clay has vertebral, cardiac and renal problems, leading to severe scoliosis, holes in his heart, five missing ribs, a misshapen left kidney and no right kidney.

As a result of VACTERL, Clay has an additional complication: Thoracic Insufficiency Syndrome (TIS). A skeletal abnormality, TIS affects the skeleton in a way that makes breathing impossible, Amy Beabout, Clay’s mother, said.

“When I was a kid, I didn’t really think much about it,” Clay said. “[The disease] was part of my life.”

Consequently, at age 5 Clay’s spine began collapsing, filling the empty space left by his missing rib bones. Clay was in and out of the hospital for the next 10 years as doctors attempted to stabilize and straighten his curved spine, switching out supportive rods that held up his back at least every six months as he grew. During some of Clay’s worst surgeries, doctors only gave him a 50 percent chance of survival, Amy said.

“The scoliosis caved in on my body, and without the surgeries I would have died,” Clay said. “There was one point when I was [at the hospital] and I asked my mom ‘What if I die?’. We just talked about [death]; it was a risk we were willing to take.”

Temporary relief came for Clay at age 9 when his doctor referred him to the Make-a-Wish Foundation, a nonprofit organization dedicated to granting the wishes of children with life threatening diseases. Weeks later, a chapter of Make-a-Wish contacted Amy, following up with a visit to the Beabout’s house; Clay had been awarded a wish.

“I began with the wish that I’d have a roller coaster that’d go through my house, or I’d get a lamborghini or a mini-submarine,” Clay said. “They won’t do that, but they’ll grant you a wish.  So I said ‘I want to be famous.’”

Make-a-Wish sent Clay and his family to Hollywood where they connected him to Make a Film Foundation. Similar to Make-a-Wish, Make a Film helps children with life-threatening medical conditions create short films about themselves.

Over the course of four trips to California between the ages of 12 and 15, Clay created his film while continually undergoing surgeries and hospital visits at home. On his first trip, Clay watched a previous candidate’s movie as an example of Make a Film’s work. Clay then began meeting with directors to plan out his own film as they taught him the process behind filmmaking.

“I remember being at this house looking out over Malibu and then looking the other direction and seeing the Ferris wheel as [Clay and the directors] were having a sword fight with wooden swords,” Amy said. “They were planning out the fight scene in the movie.”

The next trip Clay took a private tour of Pixar to learn about animation, all of which Clay did himself for his half animated, half live-action film. Clay created the clay art and drew out the characters that would appear in the movie to aid animators, as well as writing the script for the film the following summer in preparation for his third trip to California.

“It was pretty funny. I put a dog in the script thinking I would get a dog out of it,” Clay said. “I would go ‘Oh there’s a dog in the movie, is he mine now?’ And I actually did get a dog out of it, which is pretty cool.”

At age 15, Clay and his family returned to Los Angeles a final time for the premiere of his film, Deep Blue Breath.

“It’s about me going through surgeries and how I feel after the surgery. My lungs grow but my back doesn’t grow during that six-month period,” Clay said. “So once I go into the surgeries and my back gets stretched out and my lungs have more room to breathe, I can take a ‘deep breath.’”

In addition to the 16-minute short film about Clay, a documentary was created alongside chronicling its making. The duo of films has premiered in Wichita, Kan., Clay’s old home town, and San Antonio, Texas where most of Clay’s surgeries were performed, along with the original premiere in Los Angeles. Amy hopes to show the movie in St. Louis soon as well.

A year after the premiere, Clay’s scoliosis is now at bay. A spinal fusion two years ago stabilized Clay’s back, and with his lungs done growing, both Clay, now age 16, and Amy can currently describe his situation as “good.”

“Things are really good right now,” Amy said. “I’ve lived so long only reacting that I’m trying to figure out what it’s like to be calm. All Clay’s ever known is life in and out of the hospital. Now we’re learning how to actually plan.”

Listen to an exclusive audio clip from our interview with Clay below: