Sam Beckner, of Eudora, fights back tears when talking about the fundraising campaign 11-year-old Rylee Griffin organized for her granddaughter Genevieve Kiene.
Her 3-year-old granddaughter has Alagille syndrome, a rare genetic disorder that has her on a liver transplant list, Beckner said. The disease, diagnosed when Genevieve was just months old, has led to a series of associated medical complications from the toddler’s inability to properly digest food and nutrients, including the calcium needed to strengthen bones.
Recently, Genevieve, the daughter of Amanda and Doug Kiene, of Lawrence, broke an arm when she tripped and fell.
“A year ago, she broke her leg and was in a body cast from the waist down for some time,” Beckner said. “Recently, she broke her arm when she tripped and fell. Through it all, that little girl has such great spirit. She draws people to her because of her sweet nature and spirit. She is such a strong little girl.”
Rylee was one of those captured by that spirit when she saw the toddler in her cast at a fitness class Genevieve’s mother Amanda Kiene teaches for Eudora Parks and Recreation.
“My mom goes to those classes, so I met her there,” she said. “She’s always upbeat and smiling even on a bad day. She was smiling when she had a broken arm. I felt bad for her, so I started raising money for her.”
Rylee’s idea was to sell bracelets with the inscription “Faith over Fear.”
“I had another bracelet fundraiser like that with softball, so I knew I could raise money for her,” she said.
Rylee’s mother, Rachelle Griffin, said they ordered 500 of the bracelets, which they are selling for $5. The money will be given to the Kienes to help with that part of Genevieve’s pending $577,000 transplant surgery the Kienes’ insurance won’t cover, she said.
Rylee has already sold 265 bracelets, and her mother is confident she’ll have to order more to satisfy demand and her daughter’s sales abilities. Most of the bracelets thus far have been sold to friends, Griffin said. She and Rylee are now planning on mailing bracelets to those who order them by emailing firstname.lastname@example.org. More information on the fundraiser, Genevieve and Rylee can be found at the Facebook page Faith over Fear – Bracelet Fundraiser for Genevieve Kiene.
The fundraiser is much appreciated and its “Faith over Fear” message is most appropriate, Beckner said.
“The Bible says when we are in fear, we get in God’s way,” she said. “We really have to stay in faith for Genevieve.”
Contact Douglas County reporter Elvyn Jones
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