Belle was born on August 3, 2016 beautifully perfect. Never in our wildest dreams would Steven and I ever thought that Belle might have had anything wrong with her as we stared at how perfect she was. Soon after her birth we noticed that Belle wasn't like her older sister or brother that held their head up independantly soon after birth. Belle was always what we called tilted to the side. She was our "floppy baby". After many appointments and hearing that this is normal and would resolve itself with a little physical therapy for torticollis. Something inside my mommy brain, I knew something was not right. Boy we were we shocked when on September 24, 2016 our beautiful baby girl was laying on the floor with her sister and had what appeared to be her first seizure. We rushed to the E.R. and Belle was poked and tested and poked some more to be sent home with no answers. Not even a couple hours later, the "seizures" happened again. We rushed back to the E.R. this time to be taken by ambulance to Kaiser Oakland where we would spend the next few days watching more tests, more pokes and still have guesses for answers. It was assumed she had epilepsy and we were put on Anti-Seizure medicine. For months, we did Physical therapy and Nuerologist appointments to be given higher doses and nothing change. Belle never reached milestones on time and every thing took much more work to get her to do things, sitting up, crawling, walking. Nothing has been easy for Belle.  After taking her pediatrician some time around a year and a half, it was decided it was time for a second opinion.. Her pediatrician insisted that something was not adding up Insert life changing Dr. Neslon here. Dr. Nelson our new nuerologist knew right away that what Belle was experiencing was not epilepsy alone and sent us to Dr. O'Malley at Stanford. More tests, more months, more episodes. And then one day, I sent a photo to Dr. O' Malley in an email to be returned with an "I know what this is!" Life changing moment!

That night, we recieved a call that changed our reality forever. Here, we thought, "GREAT we know WHAT it is, let's fix it".... Boy was that a shock when we hear the diagnosis Alternating Hemiplegia of childhood. By the name, we thought ok...this is a childhood thing and she will outgrow it. When our Dr said to us not to Google, we knew we were dealing with something bigger. I remember getting the link from her that she sent for us to read and sighing with relief because here I am reading everything we have gone through for almost 2 years and had other people think I was crazy. The eye movements that I knew in my heart were not just "typical baby things", the stiff body that suddenly would go limp out of no where. It was all there. One paper that explained everything. And then... there it says, "no cure, no treatment". I felt this weight of the world land on my chest as we realized we are in a fight for Belle bigger than we realized.

Belle is now 4 and fights every day to have the life of a "normal child". She has days where her legs do not work, her arms won't work, her chewing is even effected. We are on medications, doing therapy weekly for Physical and Occupational, and even starting speech therapy this Fall. We watch her suffer from excruciating pain from dystonia, involuntary eye movements, loss of balance, loss of movement and many more episodes. Please donate today. We are hoping to raise money to help find a CURE. We need to help Belle and other beautiful babies, children and Adults like Belle get some relief from the pain they feel.

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