Local artist’s awareness PJs create inclusion for children

Published 2:08 pm Wednesday, May 3, 2023

NORCO — Local artist Summer McCune had no choice but to resign from her dream job as a talented art teacher at Destrehan High School while her infant daughter battled a pediatric feeding disorder. Six months later, McCune is using her art to promote inclusion and acceptance for children with a variety of pediatric conditions.

Through her business NolaBee, McCune designs pajamas that give a face to illness with hand-painted designs inspired by pediatric patients. Each set of pajamas comes with a patient card sharing the child’s story and a QR code that links to a curated storybook list related to the child’s diagnosis, allowing caregivers to start a dialogue about embracing others’ differences.

McCune’s daughter, Adler, was born in January 2022 and spent the first months of her life in constant pain from severe reflux. By the time she was treated for a cow’s milk protein allergy at 13 weeks old, she had developed an aversion to bottles and was refusing to eat. Even the sight of a bottle or being placed into a feeding position made her scream because she associated food with pain. McCune approached medical professionals to ask for help, only to be told that if her baby was hungry enough, she would eat. While most babies eat every three hours, Adler would refuse the bottle for much longer stretches, sometimes up to nearly 17 hours.

McCune relied on dream feeding, a method of feeding her baby while she slept. It was the only way to get nutrition into her body for several months, but dream feeding became more difficult as Adler began taking fewer naps and her reflexive eating faded. A mom in Texas struggling with similar issues introduced McCune to a book that helped her better understand Adler’s cues. Something as simple as wiggling a bottle in her mouth was a form of pressure. McCune had a knot in her stomach for the better part of a year as she had to learn to accept Adler’s refusal and trust that she would take what she needed to survive, even if it was only seven or eight ounces of formula in a 24-hour period. The feeding aversion transferred over to solids, making McCune feel even more alone in a fight no one else seemed to understand.

As the only person capable of feeding Adler, McCune was forced to resign from her dream job. She found herself channeling her emotions through art, just as she had taught her students. One by one, she painted five speckled frogs each representing different versions of herself, praying, exhausted, crying, just barely hanging on to a lily pad. The five speckled frogs held a special significance as the only song that could soothe Adler during the worst of times.

“I was asking myself why aren’t there more resources out there? I needed to do something to raise awareness. I started playing with the idea of awareness T-shirts. Then the idea of PJs came out of the idea that Adler had survived off of dream feeding for months,” McCune said. “I decided that if I’m going to do this, I’m going to go all in. I’m not just going to do this for Adler. I’m going to open it up to other pediatric patients battling different diagnoses. Their stories deserve to be heard, too.”

McCune reimagined NolaBee, a company she had previously used to showcase her art through door hangers and home décor, into a brand for a much larger purpose. Starting with six pediatric patients, McCune painted designs to tell a story with each pair of pajamas. Adler’s collection featured the five speckled frogs that soothed her.

Carson Landry had to be pulled from a traditional preschool setting at St. Joan of Arc in LaPlace after he was diagnosed with childhood leukemia in 2022. He began spending a lot of days with his Paw Paw, where he helps raise chickens, tends to the garden, and finds joy in riding a tractor. The tractor is featured in the design of Carson’s collection of PJs.

Meanwhile, Anderson Carriere’s pajama collection tells the story of his journey with CMV and being partially deaf. Even though he could not hear his parent’s voices as an infant, he was soothed by the vibrations of them humming, “You are my Sunshine.”

Reece Rome’s pajamas are also inspired by her soother song, the Hound + the Fox version of “You Are My Sunshine.”

Reece experienced digestive issues and was a colicky baby from the start. While it initially seemed like she was a very temperamental child, her mother, Rachelle Rome, was all but demanding bloodwork by the time she was 18 months old. Once Reece began to talk, she was able to vocalize that her stomach was hurting, and there seemed to be a connection to the hours-long tantrums she was experiencing.

At 2 years old, Reece was diagnosed with celiac disease. Within four weeks of shifting to a gluten-free lifestyle, she was a completely different child, one who laughed and smiled and played. The change in diet impacted more than just her mood. Her hair, once coarse and wiry, returned to the fine curls she had as a baby, and her nails were no longer brittle. A recurrent rash on the back of her neck faded away.

Now 5 years old, Reece is able to speak up and advocate for herself. However, it’s hard to be the kid who can’t have the cookie cake at the party or make crafts out of playdough. Eating out at a restaurant is rare because of the threat of cross-contamination. Her family has swapped out everything from kitchen gear to toothpaste and soap. Even baking with flour is a threat since it can linger in the air for up to 24 hours and trigger a flare up that lasts much longer.

“We are lucky to have friends and family that are really supportive because it’s a very restrictive lifestyle, way more restrictive that I originally thought,” Rome said. “Summer has always been one of the friends that supports us the most, but to take it to where she has with the pajamas means a lot. Being able to advocate and educate, especially kids, is what I think is great about the pajama line. Linking the children’s books to the diagnoses teaches kids to understand and not poke fun.”

When Reece’s collection launched in March, her preschool class surprised her by having all students wear a pair of her pajamas.

“Reece’s face completely lit up when she saw that. They spent the day celebrating Reece and read a story that taught the kids about gluten and celiac disease, and they had a gluten free snack for snack time,” Rome said. “It gives them that moment of feeling accepted and being understood that I think is often missed, especially for young kids with these rare conditions.”

NolaBee started out with six St. Charles Parish children and is expanding to tell more stories of children with cleft lip and palate, down syndrome, spina bfida and other conditions. According to McCune, a portion of pajama sales will support Children’s Hospital annually.

For more information or to purchase awareness PJs, visit https://nolabeemade.myshopify.com/