All in for Ellorie
Ellorie just turned 2 years old as of February 2026. She loves playing and dancing with her older siblings, going to the park, petting her dog, and listening to stories at bedtime. She's sweet, affectionate, determined, and full of life. She also has Alternating Hemiplegia of Childhood (AHC).
AHC is an incredibly rare, 1 in a million neurological condition that affects every part of our daughter's life.
On any given day, Ellorie can lose control of one side of her body without warning. Her digestive system can shut down. She struggles to communicate and move the way other toddlers do because of speech and developmental delays. While AHC often causes seizures, Ellorie hasn't had them, but we live with the constant unpredictability and fear of what comes next with this condition. We've learned to adapt, but it never gets easier as any progress is also met with new challenges.
A normal morning can change in an instant. Episodes can come without warning, leaving Ellorie unable to move one side of her body, struggling with muscle spasms, gastro intestinal paralysis that can cause her entire body to become weak; causing chronic pain and exhaustion afterward. Even on good days, we are watching and planning around AHC because one wrong trigger can change everything.
When you donate in Ellorie's name, you are funding research that could change her life. Fewer episodes means less pain and more time to just be a kid. But the impact reaches far beyond Ellorie. Rare disease research creates breakthroughs that ripple outward. What scientists learn from AHC can unlock answers for other neurological and rare conditions; the ones families are fighting quietly all over the world, helping families you will never meet and kids still waiting for hope
Ellorie, and those like her, deserve a future where dancing or excitement doesn't lead to paralysis, where the park means joy instead of risk, where her story is defined by who she is and not what this condition steals from her.
Thank you for supporting Ellorie and so many other families. Thank you for believing research matters. And thank you for standing with families like ours who live with rare diseases every day; because every step forward means a brighter future for countless others.
Thank you for giving every child and every family the power of hope.
Every gift, every share, and every bit of support truly matters as it brings us one step closer to better treatment, better support, and one day, a cure.