As most of you are aware, Britt suffers from a very rare condition called Alternating Hemiplegia of Childhood (AHC). Our road to diagnosis was a long one, due to the nature of AHC, which in it's early days, was a condition that very few doctors had ever heard of.  We noticed symptoms at 3 months old, and after too many needle pokes to count, too many EEGs, and NINE years of testing, we finally had a diagnosis. While relieved we had a name to attach to her debilitating symptoms, the reality of no cure was devastating and scary. Thankfully, we found the AHC Foundation. Through the foundation we were able to connect to medical experts on the cutting edge of research, along with our incredibly supportive AHC Families. Over the years we have seen the results of our fundraising efforts in the form of identifying gene mutations that relate to AHC, and more recently, the development of the AAV Project which hopes to lead to a cure through gene therapy. 

Now about our beautiful Britt. Her strength over the past 32 years is hard to put into words. For those of you who know her, you know first hand what I'm talking about. Despite her daily struggles, she rises above and pursues her passions. Music and theater are at the heart of those passions. Britt is a Broadway aficionado! She loves to take trips to the City to see her favorite musicals and can recite them word for word. She also takes singing lessons weekly, and on any given day at the DeLuke house, you can hear her belting out her favorite tunes. Her love of Broadway has led to a volunteer position at our local theater, and every year she looks forward to going to theater camp. Halloween is her ultimate favorite holiday, and she has never missed an opportunity to dress up, this year she will be Lily Munster. If Britt has her way, the entire family will be dressing up as well :)  

We love you so much baby! Never stop singing, never stop believing, and NEVER give up the fight! We are all fighting with you, and will never stop. Keep smiling that beautiful, contagious smile!

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 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.