Kurpgeweit family 'learning as we go' after son's diagnosis with rare brain condition

As a licensed practical nurse, Alyx Kurpgeweit recognizes when a patient is in distress.

As a mother, Kurpgeweit realized her son, Rhett, who was six months old at the time, was struggling.

"He wasn't sitting up yet and wasn't meeting normal milestones," she said.

A discussion with the family's pediatrician led Alyx, husband Matt and Rhett to Boys Town National Research Hospital, in Omaha, where Rhett was diagnosed with lissencephaly, more commonly known as Smooth Brain Syndrome.

Ironically, lissencphaly is not all that common.

"It a rare genetic condition that affects one in 100,000 babies," Kurpgeweit said.

In patients who have lissencephaly, the lack of normal development of gyri, folds in the brain, and sulci, indentations or grooves, makes a baby's brain appear smooth. Gyri and sulci assist in separating regionsof the brain and increasing the brain's surface area and cognitive ability.

Initially, a neurologist told the family Rhett was presenting as a cerebral palsy baby.

"This is something we could deal with," Kurpgeweit said.

Following magnetic resonance imaging testing, the lissencephaly diagnosies was made.

The next step: finding medical help for Rhett.

Through the Nebraska Early Development Network, an early referral program that works with Educational Service Units and local school districts, Rhett was able to start physical therapy with Angie Belitz, of Overland Rehab, at Antelope Memorial Hospital.

The toddler attends three or four therapy sessions each week.

Kurpgeweit said Rhett's muscles are contracted most of the time.

"He wants to crawl. He knows what he wants to, he can get up on all fours," his mom said.

Twice a month, Rhett works with an occupational therapist and speech pathologist.

Each week, he has a private speech session in Albion. During this time, Rhett works on eating skills.

Kurpgeweit said his swallow reflex isn't strong yet.

"He can eat pureed foods," she said.

Each month, the family of four travels to Omaha for Rhett's checkup at Boys Town.

Kurpgeweit said the medical help they've received from Boys Town personnel has been "amazing."

"We're learning as we go. It's such a wide spectrum on how it can present," she said.

It's a daunting schedule of appointments while juggling work and family life.

Matt works at Wagonhammer Ranch. Alyx works at Boone County Health Center in Albion, approximately a 45-minute drive, one way, from the family's home near Bartlett.

Alyx also is in her final year of studies at Northeast Community College, where she is enrolled in the registered nursing program.

The Bartlett community has rallied along the young family. The local fire department partnered with Ewing Volunteer Fire & Rescue Department for a Jan. 20 fundraiser, which included a meal, silent auction and raffle.

Kurpgeweit said the benefit was more than their family could have hoped for.

"The Bartlett, Ewing and surrounding communities are amazing and we're grateful to be a part of it," she said, acknowledging everyone who attended, donated and offered support. "Rhett is one lucky little boy to be loved by so many."

It's difficult to predict the future and where Rhett's diagnosis will lead.

Kurpgeweit said it gets more difficult when a new symptom arises.

Yet, there's hope.

"It's gotten easier to deal with as we learn more."

For more information: A GoFundMe account has been established for Rhett's medical and travel expenses and can be found online at https://www.gofundme.com/f/rally-for-baby-Rhett.