Page 46 - Summer 2021

Byron reads an illustrated book to Colbie at night
because a lot of diseases that are rare don’t have that support yet,” said Lisa. “I don’t know how we’d even do it all without them.”
Colbie often wears a helmet because she tends to fall. The muscle-related conditions can cause problems with balance, coordination and low muscle tone. The 2-year- old sometimes uses braces for walking support. Colbie has been sized for a wheelchair, should she need it in the future.
“Even if she does learn to walk, most of the [KIF1A] kids we’ve seen that have walked still may tire out or need a backup option,” Lisa said.
Since her fine motor skills are impacted, Colbie has a difficult time moving her tongue to the side in order to chew or speak. She does feeding and occupational therapies, as well as hippotherapy for speech at Butterfly Dreams Farm.
Lisa is proud that her daughter is making progress and able to clap and dance to her favorite songs.
“We believe she understands more than she can tell us, but it’s hard to test at this point,” Lisa said. “Even though she has very few words, she can get across what she wants to say well.”
Lisa said that Colbie’s biggest cheerleaders are her siblings: 12-year-old Cadence, 11-year-old Dominic and 10-year-olds Ashlyn and Emerson.
“They’re very helpful,” said Lisa. “Colbie lights up when they’re around.”
Lisa called Cadence and Ashlyn two “little mommas” who care for their baby sister with a natural kind of finesse.
“I will always be there for Colbie if she needs any help,” Cadence said. “I think Colbie’s a good sister because she’s so sweet, and she just makes our lives better.”
Emerson, who enjoys making Colbie giggle during car rides, has been a sweet big brother. Dominic told his mother that he believed Colbie can do amazing things even if she will be confined to a wheelchair.
“I choked back some tears and told him that I too believe she will do some amazing stuff,” recalled Lisa.
Lisa and her husband, Byron, started raising awareness and money to support research for KAND last October, soon after Colbie was diagnosed with the disease.
They joined the last nine days of the KIF1A Superhero Challenge For a Cure with a goal of helping the foundation team raise several thousand dollars toward a total $50,000.
The Schuenemans are a blended family with three daughters and two sons. Front row, from left, Cadence, Ashlyn, Dominic and Emerson. Back row, from left, Byron, Colbie and Lisa.
PAgE 44 | OcONEE ThE MAgAzINE | SUMMER 2021