💜 About Lola Mae James
On September 20th, we come together to support Lola Mae James, a bright, strong, and beautiful 6-year-old girl who has been bravely fighting a rare neurological condition called Aicardi Syndrome since birth.
What is Aicardi Syndrome?
Aicardi Syndrome is a very rare genetic disorder that primarily affects girls. It is characterized by the partial or complete absence of the corpus callosum (the structure that connects the two halves of the brain), seizures that begin in infancy, and developmental delays. It is considered life-limiting, and each child’s journey with the syndrome is unique.
Lola’s Journey
From her earliest days, Lola has shown extraordinary resilience. She began experiencing severe infantile spasms as a baby — sudden, repetitive seizures that can cause lasting brain injury. For years, her family navigated countless hospital visits, medications, and therapies in an effort to give her the best quality of life possible.
Two years ago, Lola underwent a life-changing brain surgery called a hemispherectomy, a rare and major procedure where one side of the brain is either removed or disconnected to stop seizures from spreading. In Lola’s case, the surgery was a success — the infantile spasms were eliminated. However, she still experiences seizures today and continues to face daily challenges with courage and strength.
Why We Fundraise
This year’s fundraiser has one clear and important goal: to help Lola’s family purchase a medical transport van.
As Lola grows, her care requires specialized equipment, and safe transport has become an urgent need. She is now big enough that moving her in and out of a regular vehicle is extremely difficult, and the family will soon need a properly equipped van to ensure her safety, comfort, and access to the care she depends on.
How You Can Help
By attending, donating, or simply spreading the word, you are directly contributing to this vital piece of equipment for Lola Mae’s care. Every bit of love and support brings the family closer to providing her the safe transport she needs — while also shining a light on Aicardi Syndrome and the children and families it affects.
💜 Thank you for supporting Lola Mae James. Together, we can make a lasting difference in her journey.
Also check out other Nonprofit events in Hilliard.
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