Girl with rare genetic disorder has wish granted
COLUMBUS, Ohio (WCMH) – A special 3-year-old had her wish granted Sunday.
Friends and family gathered to celebrate Lola and her fight against a rare genetic disorder with no known cure.
Lola’s parents, who call her Lo, said she is an incredibly happy girl who loves to dance, sing, and see her friends. They said parenting Lola is like bottling magic.
When she was about nine months old, Lola was diagnosed with Zellweger Spectrum Disorder, a rare genetic disorder that affects most of her body’s systems – she is blind and deaf without a cochlear implant. She also has cognitive delays and mobility issues.
Her mother Sara Kear said the disease doesn’t stop Lola from enjoying life, and on Sunday, she had a wish come through.
Kear said that the first time Lola was ever in a golf cart, you couldn’t keep the smile off of her face, and when the family was connected with Make A Wish, the idea became a reality.
The joy on Lola’s and her parents’ faces was evident when the girl got to sit in her own zebra-stripped golf cart.
“I would say, ‘Don't give up hope,’” Kear said. “Holding on to hope and appreciating every day every minute of every day with your loved ones is a real gift. And, you know, anyone who has a special rare kiddo in their life, know that it adds, it enriches your life.”
Lola’s family is raising money for medical research into Zellweger Spectrum Disorder, hoping there will be a cure one day.
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