Our daughter Olivia has brought life to our family that we could never have anticipated. Since the day she was born she has taken our breath away every day with every smile and astonishing achievement she has made. Olivia was born on a hot summer day and determined from day one to follow her own path. After 16 hours of stubborn labor, our little girl was finally in our arms, a moment that we had been dreaming about our entire lives. She was healthy and perfect in every way, but soon displayed slight eye movement that was quickly dismissed by doctors when raised as a concern. Small strange events occurred in the months afterward that slowly culminated in her first attack at 5 months old. Rushing her to the emergency room and expecting the worst, we left after days with no answers as to what caused our little girl to present such a startling and painful display. One month later, she was diagnosed with AHC giving our family answers, but even more questions as we looked to persevere this life changing disorder.

Olivia has good weeks and bad weeks that are strung together by her astonishing ability to find joy in every moment in her life. Whether it be her favorite blanket or seeing herself in the mirror smiling back. Her drive and determination, despite her painful dystonic episodes, makes it clear that she will not be held back by her challenges. Her strength and love is seen by all who meet her and her joyful eyes make even her parents forget the difficult days she has experienced in such a short period of time since her birth.

The hardest part for our family has been the feeling of losing your perfect little child every time an episode occurs. As priceless as the good moments are, they make the tough moments that much harder. Her smile leaves her face, her eyes show the excruciating pain and her body seems to shut down completely. As all parents of children with AHC know, the feeling of helplessness watching the center of your universe endure such an awful and traumatic period is overwhelming. Olivia’s episodes typically last up to a week and jump from each side of her body. Her eyes and head are locked to that side and her limbs become paralyzed or stiffened. Fortunately, she is happily soothed in the arms of her parents which helps get her through the pain and crying, though it is clear that she is just barely holding it together. Even during these long episodes, she still gives short glimpses of smiles, happily propping herself up with her one good arm, as if to say “Just kidding!”

All the strength that we have for her as parents, manifests from the love she shows us and the joy that she brings to our lives. As we have seen by the endless strength of other families experiencing this, we know that Olivia made us her parents because she needed strength and determination to provide her the path to a cure for this disorder. We will not stop until our little girl’s smile never has to leave her face again.

ABOUT ONE MISSION: END AHC

Through research, education, and family support, we have ONE MISSION: END AHC.

Through these three pillars of our mission, the AHC Foundation works to provide our community support and hope as we all move through this journey. Funding RESEARCH from small studies to gene discovery, to collaboration on landmark gene therapy that holds much potential; providing EDUCATIONAL resources to families through support groups, introductions to physicians, and our website; SUPPORTING FAMILIES through our support group, biennial family meetings, and availability of volunteers for crisis; are all ways the AHC Foundation works to END AHC. 

Join us in fundraising to continue to provide resources to families, fund research with high potential, and raise awareness of this rare disease.