Alejandra Emilia Aguilar

Alejandra's story began shortly after birth. Within her first month of life, she was diagnosed with KCNT1-related epilepsy, an ultra-rare seizure disorder. With this diagnosis, her parents Ern and Laura did everything in their power to ensure she was taken care of. That decision ultimately led Laura to be Alejandra's full-time caretaker. Laura took the initiative to learn everything she possibly could about her condition and met people from all over the country with similar cases. She has been amazing, bringing awareness to others, fundraising, and efforts on finding treatments and a cure. Alejandra's story touched so many lives.

She loved listening to Disney music. She loved cuddling with Mom and big sister Alyana, sitting with dad in "their spot" on the couch watching football on Sundays. She loved doing physical therapy with Mom and watching her oldest sister Alyssa practice karate in the living room.

Alejandra's health took a turn for the worse earlier this year when she developed a pulmonary hemorrhage due to her condition. She underwent surgery at UCSF and came home a month later. Unfortunately, this past October, two months after her 3rd birthday, she again developed another pulmonary hemorrhage. She was such a fighter; she was our Princess Warrior. This past hospital stay took a toll on her and her body needed to rest. Our precious angel passed away peacefully at home on December 20, 2023 leaving family and friends with broken hearts. Mom, Dad, Alyssa, and Alyana miss you so very much. We're asking for donations for the special goodbye that she deserves and for her parents to be able to take time to grieve for their little angel.