A Call to Nursing

After caring for her own terminally ill children, Julie Smith prepares to join the nursing profession

Story by Marti LaChance, Photo By Brian Powell

Nursing student Julie Smith is embarking on her second career. Her first job was a mother of four.

“I’ve always been a mom,” says Smith, who had her first child at age 21. But Smith’s experience of motherhood is far from the norm.

Two months after the birth of her fourth child, her three youngest children were diagnosed with a rare terminal illness known as Niemann Pick type C. NP-C is a genetic disorder that leads to a dangerous accumulation of cholesterol in the brain, liver and spleen. Patients lose the ability to walk, talk and eat; the Smith kids had feeding tubes and were wheelchair-bound by the time they passed away: Braden at age 10, Riley at age 15 and Keaton at age 14. Children with the disease typically succumb before reaching age 20.

For 15 years, Smith and her husband, Trent, cared for — and advocated for —Braden, Riley and Keaton. Their eldest child, Chandlar, did not inherit the disorder. As Smith phrased it in her application to the nursing program, “My days shifted from weekly playdates and trips to the park, to weekly appointments with occupational and physical therapists and trips to Riley Hospital for Children to meet with specialists.”

Keaton, their last child with NP-C, died in 2015. Smith was still working as a paraprofessional at Battle Ground Middle School. “I was thinking: ‘What am I going to do next?’” she says. She liked working with children. And yet she didn’t feel the pull to be a teacher.

Hearing the call

Around that time, on a drive to Indianapolis with her husband, Smith had an epiphany.

“As we pulled off the interstate exit, there was Riley Hospital,” Smith recalls. “I said aloud: ‘I think I want to work there.’”

Initially, her husband thought she was crazy. “We had spent so much time in the hospital. And ultimately, we left three kids in the hospital,” she says. “But it was an ‘aha’ moment for me. I never believed in ‘callings.’ But, yes, nursing is a calling for me.”

She started slowly, taking one class at a time at Ivy Tech Community College. Then, in the fall of 2018, Smith took the plunge and enrolled in Purdue’s second-degree nursing program.

Fond family memories

Looking back, Smith has tender memories about her child-rearing years. Raising sick children involved more than tending to their health. An outgoing couple, Julie and Trent Smith continued to enjoy lively group activities with friends and family. Unsurprisingly, their kids eagerly participated.

“Wherever we went, my kids were the lives of the party, the mayors of our little world. They were not going to sit home and be sick,” Smith says. “They knew no strangers. I really believe people learned from them. It’s weird. There is really something special about kids with NP-C. They just have a light! They have a light and a way with people. That’s why it is not a sad story. Because we were blessed.”

During those tough but treasured years, the Smiths drew support from a large and loving community of friends, co-workers, family and medical professionals in West Lafayette. “We did not walk this journey alone,” she says.

Funding for future lives

The Smiths started a charitable foundation to spur research in Nieman-Pick type C. The Smith Family BReaK Thru Fund (with capital letters B, R and K for Braden, Riley and Keaton) raised money with an annual golf outing and through the Infiniti Coaches Challenge with Purdue basketball coach Matt Painter.

In 2012, the BReaK Thru Fund gave $200,000 to support NP-C research underway in Purdue’s Department of Chemistry. There, with a molecule called cyclodextrin, researcher David Thompson is developing a promising therapy that may alleviate NP-C symptoms in the body’s visceral organs.

The Smiths understood the value of Thompson’s work. Today, the cyclodextrin therapy under development in Thompson’s lab is moving steadily toward Food and Drug Administration approval.

“The money from the Smith family fund was our first break,” Thompson says.

“Julie is inspiring,” Thompson adds. “You hope for an ounce of her strength.”

A new chapter: nursing

Today, Julie Smith is in the fourth semester of Purdue’s second-degree nursing program, an accelerated, full-time, four-semester curriculum. For the students, it is 16 months of dedicated work.

“Julie fits right in,” says Karen Atcheson, clinical assistant professor in the School of Nursing. Most of Smith’s classmates are under 30, but the students in the second-degree program have much in common.

“Despite age differences, the students are all super-directed and come together as a cohesive unit, supporting each other,” Atcheson says. “They are confident about their choice to return to school.”

Returning to school is a kind of therapy for Smith. “My children passed, and I turned to education. It seems like a healthy choice,” she says. As for the future, she looks forward to working with kids and their families, at a local hospital, or at Riley Hospital in Indianapolis.

Not that school comes easily. She misses the familiarity of her tightly knit support community. And the science-based material is a challenge. “I’d rather be doing math,” she laughs. But Smith is philosophical. “My advice is to remember that school can be stressful and overwhelming, but ultimately, you will be sitting with a patient or a family member, and they are never going to ask how you did on a test.”

Smith knows what patients and their families care most about: feeling supported and having an advocate in their health care experience.

“We had many good nurses, and others that were not so good,” Smith says. “That’s why I want to be a nurse. I want to do better.”

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