Kaylee Ashlyn Culvahouse was born on July 23, 2008. From the very beginning, she lit up the world around her. Though she was diagnosed with 1p36 Deletion Syndrome and faced challenges most of us cannot imagine, Kaylee lived each day with joy, strength, and love.
At just six months old, she was diagnosed with infantile spasms, a catastrophic seizure disorder, and endured months of intensive treatment. Over the years she also faced global developmental delays, vision and hearing challenges, cardiomyopathy, and Wolff Parkinson White Syndrome. Yet through it all, she radiated resilience.
When she was almost four, Kaylee experienced her first tonic-clonic seizure. Over her lifetime, she had a total of just 12 tonic-clonic seizures and only two hospitalizations. For more than three years leading up to late 2022, she was seizure-free.
Kaylee loved school, music, swimming, her iPad, and days at the beach. She especially loved toys that lit up, talked, or sang. She was a devoted sister to Allison and Colton, and she brought laughter, hugs, and light to everyone who knew her.
On March 20, 2024, Kaylee had her final seizure at home. Despite every effort to save her, she could not be revived. She was 15 years old. Her autopsy later confirmed SUDEP.
Kaylee was more than her diagnosis. She was light in its purest form, teaching compassion, patience, strength, and unconditional love. She showed her family that life can be beautiful, even when it does not look the way you imagined.
For me personally, a cure would have meant more time with Kaylee. It would have meant birthdays, milestones, beach trips, laughter, and the everyday joys we were robbed of far too soon. A cure would mean that no other parent would have to hold their child and wonder why they weren’t told about SUDEP, why awareness and answers came too late.
A cure for epilepsy would mean hope restored, lives saved, and a world where children like Kaylee are remembered for how brightly they lived, not how suddenly they were taken.
Her journey is not over. Her light continues to shine in the lives she touched and in the awareness her story will bring. In her memory, her family is in the process of creating Kaylee’s Light Foundation to spread hope, education, and support, so that fewer families have to endure this pain.