'Small Girl, Big Fight': Orland Girl With Rare Condition Celebrates Milestone 10th Birthday With Fundraiser

ORLAND PARK, IL — An Orland Park girl who has defied the odds of a rare genetic condition is celebrating her 10th birthday—a milestone for people in her position, her mother says.

Savannah Taylor was diagnosed at 1 year old with CDKL5, a condition that causes severe developmental delays and early-onset, hard-to-control epileptic seizures starting within the first few months of life, according to Boston Children's Hospital.

Savannah has faced immense challenges, her mother Kelli Komar said, including life-threatening seizures and a hospitalization last spring. She is blind, nonverbal, unable to walk and lives with severe, life-threatening seizures, Komar said, and "through it all, she has shown unbelievable strength and resilience."

"For nearly 10 years, our beautiful Savannah has been fighting battles that no child should ever have to face," Komar said. "

"She has endured thousands of seizures, countless medical procedures, hospitalizations, sleepless nights, and moments when we feared we might lose her. Our lives revolve around medications, therapies, medical equipment and the constant uncertainty of what tomorrow might bring.

"But Savannah is so much more than her diagnosis."

Savannah is a "sassy, music-loving little girl who adores massages, loves listening to gossip, and somehow manages to have the attitude of a teenager without ever saying a word!"

Savannah was taken under the wing of Project Fire Buddies, a locally-based nonprofit fueled by firefighter volunteerism that has sent ripples of support out to children battling critical illness and their families. Started in 2016, the organization partners with local chapters to bring comfort, fun, support and companionship to their "fire buddies." The now not-so-small and very mighty organization has expanded to more than 175 chapters in more than a dozen states. The nonprofit's 1,200+ volunteers have impacted more than 750 children, with $5 million gifted to support and uplift families, according to its website.

"They are part of her 'village,'" Komar said. "All they have contributed from birthdays and Christmas, and visits after hospital stays—they have helped her have 'more good days'."

Currently, the family is struggling to obtain coverage for intensive therapy services Savannah needs, Komar said, as well as functional medicine treatments that have shown great results but are not covered by insurance.

"As her mom, I've learned that strength isn't always about being brave," Komar said. "Sometimes it's about surviving another sleepless night, advocating when you're exhausted, celebrating the smallest victories, and finding hope when the road ahead seems impossible.

"Our journey has been filled with heartbreak, but also extraordinary love, resilience and the kindness of people who remind us that we are not alone.

"As we celebrate Savannah's milestone 10th birthday, we're not just celebrating another year. We're celebrating every seizure she's survived, every obstacle she's overcome, and every precious moment we've been blessed to have with her.

In celebration of Savannah's double-digit birthday and as a fundraising effort, her family on Saturday, Oct. 24, will hold a Halloween-themed event featuring a free taco bar, split-the-pot and raffle baskets. It's set to take place from 5 to 8 p.m. at Longford Pub, 13813 Cicero Ave., in Crestwood.

Proceeds will go toward Savannah's medical care and therapies and to Saint Vincent de Paul charity, which last year donated an accessible van for the family's use.

"Because our family has been so blessed by the generosity of others in the past—including the gift of a donated handicap van—we also want to use this celebration to give back," Komar said. "A portion of the proceeds from the benefit will be donated to Saint Vincent de Paul to support their wonderful work in the community and to thank them for helping make Savannah's transportation possible."

Those who can't make it but still want to support the cause are invited to donate using the QR codes below.

"Every donation helps bring hope, healing and comfort," the family said.

"It truly takes a village, and we are forever grateful for ours."