Meet Jace, who dreams of becoming a child life specialist
Living with no sacrum means a lot of medications and difficulty going to the bathroom. But Jace has learned what his body requires — from a care team who has inspired him to want to help other kids in the hospital.
Many kids get ideas of what they want to be “when they grow up” from their parents, school or online. Basketball star. Teacher. YouTuber. Others, like 10-year-old Jace, are inspired by their own journeys.
“I want to be a child life specialist to help kids going through medical procedures like I’ve had to go through and give them ways to feel better about their experiences in the hospital,” Jace said.
At Children’s Health℠, Child Life specialists help patient families experiencing the unthinkable. They provide patients with therapeutic play opportunities, help them and their families understand complicated procedures and, mostly, help get them back to being kids again. The program comes at no cost to families, relying instead on the generous support of donors.
When Jace talks about this dream, he recalls one of the Child Life specialists at Children’s Health who made a dinosaur bear out of an NG tube so he “wouldn’t feel so alone.” Jace needed his own NG tube (a flexible tube that goes through the nose, down the throat and into the stomach to clean out his bowel) when he was hospitalized in 2023 for chronic constipation related to his condition.
His mom, Angelina, is thrilled by his career choice. She and Jace have experienced hospitals that don’t have Child Life programs or other supportive services, like pet therapy.
When I had to have my own surgery last year, it got me thinking: ‘Why can’t adult hospitals be more like children’s hospitals?’ I could’ve used a coloring book to pass the time, a little extra comfort from a therapy dog or someone who knows how to distract you at just the right moments.
— Angelina, Jace's mom
As Angelina processed out loud, she and Jace dreamed up a new idea.
“We could bring the healing powers of Child Life into adult hospitals and call it 'Adult Life,” Jace said.
Focusing on brighter moments
Children who experience longer stays at Children’s Health often dream of becoming child life specialists. Their aspirations serve as a testament to how moments of delight and comfort can help the youngest patients cope with difficult experiences during hospitalization. Jace has had over a dozen multi-day hospital stays at Children’s Health since he was born with two rare congenital conditions:
Right coronal synostosis, a condition where one of the flexible joints between a baby’s skull bones closes too early.
Sacral agenesis, a neurological condition similar to spina bifida where a child is born without some or all of the lower part of their spine (sacrum).
At 10 months old, Children’s Health pediatric surgeons performed an operation to open up Jace’s skull so his brain could grow and develop normally. Prior to his surgery, Jace had to wear a special helmet for four months to help correct some of his skull’s deformity and make his surgery less intrusive. After the surgery, Jace was left with a zigzag scar on his head that prompts some kids to ask, “Where did you get that cool haircut?”
“We still have Jace’s cranial helmet in our living room. It has a Dallas Cowboys wrapper on it, which just goes to show how the staff made the experience of having a tiny baby who needs skull surgery a little easier and a little lighter,” Josh, Jace’s dad, said. Jace’s diagnosis of sacral agenesis came a little later, when Jace was 1 year old.
One day, Jace suddenly started shaking his head back and forth. As a precaution, a neurologist ordered a full body MRI to make sure it was strictly behavioral. He’d also been struggling with chronic constipation and not wanting to eat.
On Christmas Eve, the neurologist called Jace’s parents to confirm that the imaging showed no issues with Jace’s skull. Instead, physicians had found that he was missing his sacrum, a part of the spine, and diagnosed him with sacral agenesis.
Missing a sacrum means Jace has both a neurogenic bowel and neurogenic bladder — the medical terms for when the nerves in the bladder and bowel don’t function properly. To urinate, Jace has to use a catheter every three hours. And to relieve his bowels, he must take several medications and use cone enemas daily.
The power in understanding — and feeling understood
When chatty Jace describes what he has to do to connect his catheter or how his cone enema works, he uses all the proper medical terminology, sounding like a physician-in-training.
Jace, who experiences anxiety, feels like understanding what is happening in his body is the best way for him “not to freak out and go insane,” he said. And he’s grateful his team has always taken the time to make sure he understands the what’s and why’s of every procedure or treatment.
“Every time I go to the hospital, they treat me as nicely as they can. They always tell me what they're doing. And they always do this 3-2-1 countdown — so I’m as prepared and comfortable as possible,” Jace said.
His mom explains that when he’s had to go to the hospital because he’s too backed up, he’s often the one telling the nurse what breakdown of glycerin and saline to use in his IV.
“He really has learned so much about his own body and care,” Angelina said.
During several hospital stays, Jace recalls several visits from pet therapy. The program, which was launched by and continues to rely on philanthropic support, aims to provide some of the furry comforts of home at Children’s Health.
“I still have their trading cards in my bedroom,” Jace said. “I especially loved the dogs that hopped into bed with me.”
Jace is remarkably straightforward about his condition and what helps him day-to-day and is passionate about sharing his story with others.
If I share my story with others, other kids will feel the similarities. And they’ll know that someone else understands them, which could help them get through their day.
— Jace, Children's Health patient
In the summer of 2025, encouraged by his care team at Children’s Health, Jace attended Camp John Marc with dozens of kids sharing similar physical challenges. He describes camp as the place that taught him how to do a cone enema by himself and, more importantly, as “a place where you just feel like you belong.”
Compassionate care that goes above and beyond
When Jace’s parents, Angelina and Josh, think about the care they’ve received from Children’s Health, they agree on one thing: The hospital is a place where everyone goes above and beyond — not just for Jace, but for their whole family. A few things that have stood out to them include:
How the team has been so good with Jace — and their other son. When they’ve been at the hospital with Jace and their other son, Anson, who has autism and Tourette’s, the care team helped keep Anson occupied. “That’s not something we’ve experienced at other hospitals,” Angelina said.
How donors helped meet their basic needs. The family has been so grateful for the Women’s Auxiliary cart that comes by hospital rooms with snacks and toiletries. “They’ve brought us a pillow or blanket when we’ve needed it — even detergent to wash clothes so we didn’t have to travel all the way home to do that,” Angelina said. “Those things have been especially helpful since we only have one vehicle in our family.”
How the quality of care is consistent across specialties. “Whether we’ve met with Dr. Alexander Llanos, the motility specialist, or the GI psychologist or nutritionist, or our urologist, Dr. Micah Jacobs, or our gastroenterologist, Dr. Christopher Jolley, we’ve always received the same level of quality care,” Josh said.
How the doctors are thoughtful. “I remember one time Jace was in the hospital. It was a Saturday morning, and Dr. Jolly came by to check on him. And he didn’t just check on him, he also brought him a snake toy — because he knows Jace loves snakes,” Josh said.
And most importantly, how donors show up in big and small ways from million-dollar gifts to lemonade stands to make the impossible possible for kids like Jace. “Your donations mean a whole lot to kids like me and to all kids in the hospital. It helps them get all the care they need to heal,” Jace said.
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