This is a terrible nightmare. This can't possibly be happening to our daughter, to our family. This cannot be real. 

These were the first thoughts that came tumbling in when we received the news that Lainey has an ultra-rare genetic genetic disorder called Alternating Hemiplegia of Childhood, or AHC, a disorder that affects just 1 in a million. On top of that, we were told Lainey has the gene mutation that typically causes the most severe symptoms of an already debilitating disorder. Our world was crumbling beneath our feet. And yet, after 5 months of worry, stress, and anxiety over abnormal eye and body movements, seizure-like behavior, and an overall gut feeling that something wasn't right, it was a relief to finally have a diagnosis; to finally have a place to focus our efforts and to fight like hell to take control of the situation. 

As we began to research AHC, our already broken hearts were further torn to pieces with phrases like 'devastating neurological disorder' and 'like 7 disorders in 1.' But through all of the darkness, we also found some light and a reason to hope: we learned that there is a potential to cure this currently incurable disease. 

Lainey just turned 2 and she has her whole life ahead of her, a life that we pray is filled with more joy and happiness than pain and suffering; a life where there isn't the threat of a paralysis episode lurking around every corner and where her body will no longer hold her hostage. We dream of days where nothing can interfere with her sly smile, lazy laugh, and her curious and determined spirit. She deserves better. 

Paralysis, dystonia, seizures, eye movement, low tone, emergency meds, therapy, isolation, fear, helplessness. These are just a few of the words that we hope will be a distant memory for us with the hope of a cure. We are in a race against time. Help us Race to End AHC and to fight for a better future for Lainey and all of her fellow AHC warriors. 

The Race to END AHC is on! For over 25 years the AHC Foundation has been in the race to treat or cure AHC for all our AHC kids. It has been a long race, and the foundation has covered much ground by taking many steps toward that goal. 

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 the 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 fundrasing to continue to provide resources to families, fund research with high potential, and raise awareness to rare disease. 

www.ahckids.org/race