A local family battling a rare disease is seeing community members rally around them. Organizers of an event in Princeton hope to see even more support.
Tannah Gibbs is a student at Lyon County schools. The 11-year-old suffers from Niemann-Pick disease type C, a rare progressive genetic disorder characterized by an inability of the body to transport cholesterol and other fatty substances (lipids) inside of cells.
Her mother, Niki Leitner, said the diagnosis was difficult, but the community’s response has given her hope.
“We’re not in this alone, we know we’re not,” Leitner said. “After she was diagnosed, I prayed for peace. When I allowed myself to talk to people about it, you can’t imagine the love and support she’s gotten. She knows she’s not in this alone.”
Leitner said she was recently contacted by Kent Darnell about participating in Walmart Heart, a program that began in 2006 when four Walmart truck drivers came together in Seymour, Indiana, to try and make a positive impact on their communities. The drivers heard the story of a local boy whose mother needed help with her son, who needed surgery. Since then, the program has grown to include hundreds of drivers volunteering their time to create a special day for a local child.
Motorists may have noticed the distinctive Walmart Hearts trucks rolling along interstates with photos of past participants.
Typically, drivers meet with the family ahead of the day to plan out a day as unique as each child. On the special day, drivers pick them up and make their way to the local Walmart, often assisted by family members, emergency responders and volunteers.
Darnell is one of those special drivers donating his time.
“He came and talked to Tannah and found out the things she likes,” Leitner said. “There will be some surprises for her when she gets to the store.”
Darnell recently reached out to local agencies for support in making Gibbs’ trek from home to the Princeton Walmart a special one. He and Gibbs will leave from Huck’s in Kuttawa on Aug. 18. Their convoy will roll out along U.S. Hwy. 62 at about 9:45 a.m., and is open to those who want to show support for Gibbs.
Organizers hope it will be a more enjoyable trip than the ones Gibbs normally makes.
The family spends countless hours on the road between doctor visits in Chicago, Illinois, and Nashville, Tennessee. Gibbs makes a 12-hour round trip to Chicago every two weeks to undergo lumbar punctures, while family members head to the Volunteer state two or three times some weeks to keep appointments with cardiologists, neurologists and other specialists.
Gibbs receives Cyclodextrin through the lumber punctures, a band of sugar molecules found on some packaged food labels and in cosmetics.
“She just amazes me. She never complains,” Leitner said. “She just gets in the car and goes.”
NPC is a fatal disease, but the trips try to help combat side effects like memory and hearing loss, or losing muscle tone which causes an unstable gait.
Leitner said she appreciates not just community response, but support close to home.
“My mother, Sherry Dunn, makes [the Chicago] trips possible,” Leitner said. “She’s been there since day one. She’s dedicated herself to this.”