Livi's hope to end AHC

Since birth, Olivia has been able to bring joy to every room with her personality. On good days she loves to dance to her favorite songs with her signature chicken dance making it impossible not to laugh and join along. Her smile melts everything around her and makes you forget there could ever be anything wrong in her world.

Our daughter Olivia, was diagnosed at 7 months old with a rare neurological disorder called AHC or Alternating Hemiglegia of Childhood, which despite the name is a life-long disorder. It presents with periodic episodes of painful muscle stiffness, partial or full paralysis, and uncontrollable eye movement. Her episodes take away her ability to stand, swallow food, drink liquids or sit upright. She is fully aware of what is happening to her, but is left powerless to communicate or do anything about it. These episodes can start at anytime and with an unknown duration from hours to days.

As of now there is no cure or treatment for AHC .. Yet.

There are approximately 300 people diagnosed in the US with AHC leaving medical research and future treatment funding extremely difficult to raise and left to the families to obtain.

The AHC community is working on genetic therapies that could provide a cure for AHC. While we’re thrilled that hope could be on its way, we have deep worries that the treatment could be costly. We want to be sure that we can afford it, when it’s available. Your gift will not only ensure that we can give our child access to life-changing genetic therapy, but it will also assure that we can continue to provide the care she needs now, at home.

We are beyond thankful for your support,

Olivia's Parents,

Brian and Christy Roy