Page 47 - Summer 2021

With the help of staff and volunteers, Colbie rides a horse as part of speech and hippotherapy at Butterfly Dreams Farm
Dominic wrote a song for the piano called “Colbie’s Lullaby” when they hit $500. Emerson drew Colbie as a superhero to give to a lucky person when they reached $1,000. Ashlyn sang a song she had written for Colbie when they raised $1,500.
By the time the fundraising challenge ended, they had raised over $3,000.
“We were truly shocked to exceed our goal in such a short time and are forever grateful,” Lisa said. “The kids really got to see how they can have a part in making a difference.”
To celebrate surpassing their $2,000 goal, all four of Colbie’s siblings filmed themselves singing Colbie’s favorite song: “I Love Me” by Meghan Trainor.
Fundraising gave the family hope that they were not alone. After the initial campaign, the Schuenemans encouraged people to donate directly to kif1a.org or purchase a “I Care for Colbie” T-shirt. Profits go to kif1a.org to support research for KAND treatment and a cure.
“If the kids wear the shirts to school, it opens up the opportunity for them to tell their friends and share their love of Colbie,” said Lisa.
The deaths of two babies in their KIF1A parent support group
have reminded them that the fight to find a cure is a difficult one. Children with more severe KAND are born needing feeding tubes, surgeries, oxygen and extensive medical care.
“These precious babies and their parents are the true definition of determination. With each loss, our entire community grieves,” Lisa said. “It reminds us to count our blessings but also to continue to fight harder to seek a cure so that nobody else has to experience this pain.”
Within the KIF1A support group, Lisa found three other families whose children had the same variation of KAND as Colbie. One of those children lives in the Atlanta area.
Lisa explained that it’s been “therapeutic” to blog and post pictures and videos on Instagram about Colbie and the family’s journey. During Colbie’s birthday week, Lisa shared an Instagram dance challenge to raise money for KIF1A.org and promoted genetic testing and research efforts.
The Schuenemans will never stop fighting for Colbie and other children affected by the disease.
“I think it takes time to accept a diagnosis like this,” Lisa said. “We focus on doing the best for her because the best thing we can do is give her these opportunities to be stronger.”
SUMMER 2021 | OcONEE ThE MAgAzINE | PAgE 45