Bentley’s Six-Year Journey to Home (and a Shiny New Camper!)

Six years ago and living in the small town (“small” being literal; the population is 165) of Geneva, Iowa, Kris and Nathan Erickson could hardly have envisioned that they’d one day pack up their lives and move to the suburbs of St. Paul, Minnesota, population 302,398.

Then, Bentley came along. And everything changed. Today, Kris and Nathan call the move “the best decision we ever made.”

Born at 31 weeks and with multiple congenital issues, Bentley spent his first months of life in an Iowa City neonatal intensive care unit more than two hours from home. Besides esophageal atresia, which means his upper esophagus did not connect with his lower esophagus and stomach, Bentley faced a number of complications: a hole in his heart, a mass in his lung, a missing kidney and craniofacial differences. Then add a diagnosis of hydrocephalus, detected right before Bentley’s scheduled discharge date.

All told, Bentley underwent 10 major surgeries before his fourth birthday. Given the complications he’d already experienced, his parents were understandably concerned when they detected a lump on his back. “My heart sank,” says Bentley’s mom, Kris. “We did an MRI and discovered a syrinx on his spine.”

A syrinx is a fluid-filled cavity within the spinal cord that can potentially cause nerve damage. A neurosurgeon told Bentley’s parents to come back in six months to see if it had enlarged. Dissatisfied, Kris and Nathan sought another opinion.

“I wasn’t comfortable waiting for permanent neurological damage, because Bentley already has like 26 diagnoses,” says Kris.

By serendipitous chance, Kris and Nathan would discover Gillette Children’s Specialty Healthcare right at this time. Kris credits something else, as well. “Within two weeks of being told, ‘Come back in six months,’ we met two families who told us about Gillette. We believe the grace of God lit a path for us,” she says.

Bentley soon had an appointment with pediatric neurosurgeon Peter Kim, MD. Kim said his family was right to be concerned. “He explained that this is what he is good at—this is his specialty. He could reduce the pressure in Bentley’s brain that was causing the syrinx,” says Kris. “He put us at complete comfort.”

The morning of Bentley’s surgery, Kim approached his parents with surprising news. While prepping for surgery the night before, he noticed what he called a “little blip” on Bentley’s MRI. He suspected a blood vessel, and ordered a CAT scan to confirm. Sure enough, it was a major blood vessel.

“Dr. Kim saved Bentley from having a stroke because he had the compassion and the integrity to prepare, and to go into that surgery with 110% focus. And that’s the norm. It’s not because Bentley is some famous kid—at Gillette, every kid is a famous kid.”

At that point, Kris and Nathan began contemplating a move to Minnesota. Iowa’s privatization of Medicaid cemented their decision and they began house-hunting in the St. Paul suburb of White Bear Lake, which they picked for its school district’s exceptional special education services and the city’s proximity to Gillette.

The Ericksons found their dream home with one catch—an offer already on the table. On their realtor’s advice, Kris and Nathan wrote a letter to the homeowners explaining why they needed to be close to Gillette. Once again, they say a higher power intervened.

“The homeowners accepted our offer. They told us their grandchild was a patient at Gillette before he passed away,’” says Kris. “On the day we moved in, we found out it would have been their grandson’s birthday. It was all meant to be.”

Kris and Nathan have seen significant improvements in Bentley since moving to Minnesota in April 2017. They describe him as “a whole new child” with the resources available at Gillette, and more generally, in Minnesota. “He’s steadier on his feet. He’s talking. He’s reading. He’s doing wonderful in school,” says Kris. She adds that if Gillette offered letter jackets, Bentley would have already lettered for the Gillette varsity team.

“Being a Gillette patient, it’s similar to a sport, in a way. It takes dedication. It takes courage. It takes perseverance. It takes all of the same qualities that you would need to earn an actual letter.”

Bentley began kindergarten in September 2017. He receives special education services but is also integrated into a traditional kindergarten classroom, and he’s thriving in the new environment. “We were nervous to send Bentley to the classroom and scared he’d face bullying due to his differences. We found that the exact opposite happened,” says Kris. “The kids are nurturing, kind, curious, compassionate, loving and helpful.”

To see what the future holds for Bentley, look no further than his driveway. There, he’ll proudly show off his state-of-the-art Jayco Fifth Wheel Camper, a gift from the Make A Wish Foundation. The camper means Bentley and his family can, for the first time, have the freedom to explore the outdoors without concern over how to transport the medical equipment he needs. They’re already planning for camping trips in their new home state, and in the meantime, Bentley loves simply spending time in the camper watching Ellen, his favorite show.

It’s been a long road, and Bentley’s parents say they’ve finally found home. They don’t just mean Minnesota. “Being at Gillette is like being home,” says Kris. “We truly sleep better each night knowing Bentley receives the best care in the entire world. Raising a child with medical complexities is a long and lonely road. Gillette makes this journey a life filled with love, kindness and hope.”

Moving to Minnesota, adds Kris, is the best decision she and Nathan ever made. “We love living here and thank God each day for this opportunity.”