3-Year-Old with Rare Disease Keeps Smiling

Emily Progin, PR and Communications Coordinator

Release: Immediate

3-YEAR-OLD WITH RARE DISEASE KEEPS SMILING—NEEDS A WHEELCHAIR VAN

Layla Holle Brings Love and Life to Neosho Falls Despite Her Medical Challenges

NEOSHO FALLS, Kan.—At just three years old, Layla Holle has endured more medical challenges than most adults. Living with the rare brain malformation lissencephaly, she uses a wheelchair for mobility and experiences frequent seizures. To keep Layla healthy and happy, her family needs a wheelchair accessible van—but insurance won’t help with the cost. That’s why their loving community has turned to the trusted national nonprofit Help Hope Live for fundraising.

On the surface, Layla’s life is full of limitations, from limited mobility and wheelchair dependence to a feeding tube, a medically monitored diet, and frequent ER visits and hospitalizations. But to the Neosho Falls community, she is a shining light with limitless love and energy to spare.

“She is full of sunshine,” explained mom Ali Holle. “Everybody in town loves Layla—local stores and medical offices always ask how she’s doing and where she is if I show up without her.” Like most kids her age, Layla likes the colors pink and blue, Baby Shark, Cocomelon, light-up toys, and cartoons.

Layla’s diagnosis was a life-changing experience for her family. “It was a game-changer,” explained Ali. “There were so many new things we had to learn, and we had to learn to be strong and be advocates for someone who couldn’t speak up for herself.”

A wheelchair van represents a massive improvement in Layla’s life, offering safe and consistent access to medical care plus day-to-day engagement with the community she loves—but insurance won’t help with the expense despite the medical necessity. That’s why Layla’s loved ones have turned to Help Hope Live, a trusted medical fundraising nonprofit.

Tax-deductible donations can be made at: https://helphopelive.org/campaign/21245/

Unlike a GoFundMe campaign, donations to Help Hope Live are tax deductible to the extent allowed by law, and all funds raised will be managed by the nonprofit to cover verified medical and related expenses. Help Hope Live verifies medical and financial need for every patient.

Layla’s medical journey and the fundraising campaign in her honor have allowed her family to see the overwhelming good in the community around them. “So many people are praying for her,” Ali said. “We have family everywhere who want to help—whether or not they are family by blood, they help whenever they can.”

Help Hope Live is a national nonprofit that specializes in engaging communities in secure, tax-deductible fundraising campaigns for people who need a transplant or are affected by a catastrophic injury or illness. Since 1983, campaigns organized by Help Hope Live have raised over $172 million to pay patient expenses. ###

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Written by Emily Progin