Hi friends and family, thank you for joining the Race to End AHC!!!

Vera has had many exciting things happen recently. The biggest that she has been attending Pre-K and is absolutely loving it. She thoroughly enjoys her classmates and most of all her teachers. She has started using her walker a ton and is quite proud of herself. She cannot yet stand or walk without assistance but is striving to be independent. Crawling as her main mode of transportation has now turned into holding mom or dad’s hands and strolling around the house. She also adores her little brother Isaiah and loves to play. She cannot talk with him yet, but they have their own sibling connection. Her inability to talk with us frustrates her at times but she is getting better at communicating.

Vera's battle with AHC seems to be one with no rhyme or reason. What we think may send her into an episode one day may not the next. While she is like most kids, AHC doesn’t allow her to do many typical things. A trip outside on a windy day may trigger an episode that can last days. Baths or a dip in a kiddie pool can act as trigger as well. Simple, everyday activities can be upended in the blink of an eye.

Her episodes also vary greatly. The most common type is her inability to use her left or right arm. While this is certainly not ideal it pales in comparison to the severe episodes she suffers. These may include full body dystonia or hemiplegia which take away her ability to sit up, eat or drink. The dystonic episodes are especially painful as her whole body is contracting.

No person should have to go thorugh life with this heartbreaking disease. We ask for your help to one day put an end to AHC, all donations help get closer to a cure. Thank you!