OGDEN — The scrunchie is an everyday hair accessory for most people, but to the children of Kim Harbath, it has become an item used to pay tribute to the lifetime of service by their mother while helping build a better future for her medically challenged granddaughter.

“From 2018 to 2019, I was living in Portland completing a year of service with Americorps,” said Kim’s daughter, Kassie Harbath, through email. “Mom and I Facetimed every day, and one day I told her that scrunchies were coming back in style and I was wondering if they would be easy for her to sew.”

Three days later, during their daily phone call, Kim pulled out a finished scrunchie she had sewn and held it up to the camera. Soon, she began making some for Kassie and her sister Kari’s friends. When Kari Harbath’s daughter, Sloan, was born and admitted to the Newborn Intensive Care Unit, Kim made scrunchies for her nurses.

Kim, Kari and Kassie started talking about making and selling scrunchies to bring about awareness to Sloan’s medical condition, called CHARGE Syndrome. They called their business Sloan’s Scrunchies.

Sadly, however, Kim died unexpectedly in her sleep last September, just five months after the birth of her granddaughter.

“Honestly, at first, I truly felt like I couldn’t make it without Mom. There wasn’t much in the way of optimism or coping beyond just survival mode,” Kari said. “Kassie and I took a short trip to my parents’ hometown where we have some really intense memories. This helped us in an immediate way as we stepped back to our childhood for a few days, and reminisced about Mom, before facing the realities at home.”

After returning home, Kassie was going through her mother’s personal belongings and found her sewing machine, a gift she and Kari bought for her birthday, and unused material she planned to use to make the scrunchies.

It was at that moment Kassie realized this was a great opportunity for her to begin following her mom’s motto of “healing through advocacy.”

“I had never sewn before in my life,” Kassie said. “The closest thing I had ever done before this was crocheting and cross-stitch, but nothing with a machine.”

Kassie taught herself how to make the scrunchies, and she and Kari began selling them on social media sites and at the farmer’s market in Ogden.

“A lot of the fabric we are currently using to make the scrunchies was Mom’s,” Kassie said. “It’s been fun to see her fabric on so many people’s heads. Most of the time I spend at the sewing machine, I try to not do anything else except focus on sewing. I find it to be a time where I can spend time thinking about who my mom was and reflecting on how much she helped shape me as a person. Sewing has become very therapeutic for me.”

Kari said the reactions from the public regarding the scrunchies are wonderful.

“I think sometimes people initially look at us and think, ‘Hey, look at those silly girls over there trying to sell scrunchies.’ But once they realize the intention behind every scrunchie, it holds a much deeper meaning,” Kari said. “We try to find really unique fabric — stuff like quotes from ‘The Office,’ ‘Space Jam,’ Lizzo, etc., and Kassie makes amazing scrunchies out of all of it.”

During Kari’s 20-week pregnancy ultrasound, it was discovered Sloan has a cleft lip and club feet, but beyond those findings, she was growing rapidly and her heart looked strong.

Things changed on the day of her birth, April 19, 2019, when concerning fetal heart tones prompted an emergency cesarean section.

“She wasn’t crying. In fact, she wasn’t even breathing. My heart sank,” said Aaron Loftus, Kari’s husband and Sloan’s father.

“Kari was in the other room, and at that moment, I had thoughts that Kari may not even get to meet Sloan. I kept repeating in my mind, ‘Please breathe. Please — just breathe.’”

After she was stabilized, Sloan was flown to Primary Children’s Medical Center.

When all of the tests came back, they revealed Sloan had a bilateral cleft lip/palate, bilateral club feet, a recessed chin, jaundice and a heart defect. She was also deaf and blind. Doctors diagnosed her with CHARGE Syndrome.

The disorder, which affects approximately one in 10,000 babies, is complex, involving extensive medical and physical difficulties that are different in each child, according to the CHARGE Syndrome Foundation. Many children are often born with life-threatening birth defects, including breathing and swallowing problems, vision and hearing loss, balance problems and delayed development.

Sloan has had several surgeries, including a tracheotomy, feeding tube, club foot surgery and cleft lip repair.

Kari said as terrifying as it was, her mother’s love and dedication to Sloan truly taught her and Loftus how to love and be there for their baby girl while the couple was in the midst of shock.

“She met with an expert on CHARGE and the deaf-blind community and learned that the biggest thing we could do for Sloan while she was in the NICU was to let her know we were there with touch cues,” Kari said. “Thanks to my mom and Sloan’s amazing primary nurse, they implemented a rule that nurses and doctors followed where they were required to touch Sloan’s forehead before doing any treatment or tests, to let her know they were there since she couldn’t see or hear them. Still to this day, Sloan’s team of experts and therapists comment on how open Sloan is to touch and how she loves to explore the world around her.”

When they brought Sloan home at the end of May, Kari and Loftus would see Kim sneaking into the house early in the morning to deliver coffee and breakfast and steal a quick snuggle with Sloan before going to work.

The Saturday before Kim’s death, Sloan took her first ambulance ride to Primary Children’s Medical Center. She had a cold and her oxygen was dropping dramatically, Loftus said. Because he and Kari were both sick with the same cold, Kim and her husband, Paul, canceled work and stayed at the hospital with Sloan.

“At one point, Kim remarked that those were the most meaningful, best two days she had with Sloan since Sloan’s birth. It was precious time with Sloan and her grandparents, and although Sloan was sick she was laughing and smiling both days,” Loftus said.

Kim was a catalyst for community service with the annual Come Together Community meal and numerous other volunteer jobs, her children said, and was always doing for others, expecting nothing in return. She was compassionate and radiated kindness and intention — two words she lived by. She advocated for people of all walks of life.

“My mom just loved the Ogden community and the pockets of people we know here,” Kari said. “We are so thankful for the ways people have shown up for us, and it will always be a beautiful example of something my mom felt so strong about — acts of positive intention.”

As time has gone on and the fog of grief has begun to lift, Kari and Kassie said the life their mother exemplified is what has kept them going.

“My goal now is to turn up the volume in our life for me, Sloan, my family, and of course my mom,” Kari said. “My mom always said ‘there’s healing through advocacy,’ and not only does that apply to our experience with Sloan, but now it applies to missing my mom.”

Sloan has continued to grow and excel in ways nobody ever expected, surpassing all expectations and continuing to do things no one thought possible, her mother said. Doctors have noticed Sloan probably has some light perception in her right eye and maybe more. Physical and occupational therapists have all agreed that she will probably walk one day, despite being told otherwise.

“I see my mom in Sloan every day, through her smile, her laugh, her naps, and her humor. I think many of us look at Sloan and immediately think of my mom, and for that, I’ll be forever grateful,” Kari said.

As Kassie continues to sew the scrunchies, she said she is always looking for unique fabric.

“We try to pick out fun different types of fabric so we can have lots of variety,” Kassie said. “We never know what people want in their hair and we want to appeal to all heads.”

The scrunchies are being sold for $10 apiece. Forty percent of the proceeds will go to the Kim McCorkle-Harbath Memorial Scholarship at Weber State University, where Kim was a student.

Also, the family as had a nature bench built that they plan to place somewhere in the community in memory of Kim. The handmade bench will be located where people can sit and enjoy their own form of “Nature Church.”

“Nature Church was a big thing for our mom and dad,” Kassie said. “Every Sunday, they would go on drives and hikes together to connect with nature. Mom always said she was connecting with her mother and (deceased) daughter Halley in nature where the veil was thinnest.”

Loftus said the family ordeals have shown them “how important it is to recognize other people in their spot in life and lending them a hand in whatever way you can — something in which Kim was an expert. That’s really what being an advocate is all about, and everyone needs that person in their corner.”

See what people are talking about at The Community Table!