For the last 14 years, my family has lived with a rare disease known as Alternating Hemiplegia of Childhood, or AHC. It took up residence in our home without invitation and will never leave.
Our home has been rearranged, modified, and expanded to accommodate the needs of AHC. We wake up and go to sleep based on AHC’s schedule and our lives have forever been changed. Even though AHC will never be welcome in our home, there are a number of attributes we have grown to appreciate.
AHC is one of 7,000 rare diseases that affect over 30 million Americans. This means that there are a lot of families living with some of the same challenges as me. Some of the hurdles that face the entire community of rare diseases include delay in diagnosis, lack of public awareness and understanding, the need for more research, financial hardship, insurance headaches, educational roadblocks, lack of resources, and a sense of being marginalized. By joining forces with groups like the National Organization for Rare Disorders (NORD), I can learn from their experience and not feel so alone.
On the days when it feels like AHC is taking over our house, I am fortunate to have an amazing group of fellow AHC parents with whom I can connect. My fellow parents have provided me with insight on how to manage new symptoms, seek resources, ask for help, and find strength when I think it no longer exists. These parents have shared stories of their own challenges with such frankness that their kindness is overwhelming. They often share stories that aren’t meant to be funny, but they are. They sometimes come at such unexpected times that they truly make my day.
The time-sucking house guest that is AHC has taught me to spend quality time with those in my house that are not affected with AHC. That would be AHC’s siblings. Siblings can really struggle with how to fit in a family that is being consumed by AHC. To make sure AHC does no more harm, I have learned to keep my true priorities in focus and put spending one-on-one time with my daughter at the top of the list.
And finally, AHC has taught me to learn as much as possible about AHC in order to live with it. When I stopped fighting it and learned to understand it, I gained a much stronger sense of what AHC is really about. By educating myself about AHC, I became a better advocate for my entire family. By joining forces with other AHC families, I became part of a supportive and amazing group. While I will never wish AHC to visit anyone else, I certainly can appreciate where AHC comes from and I can make its stay in my house as calm, loving, and acceptable as possible.
For more information about ANC, visit www.ahckids.org
Written by Vicky Platt, mom to AHC daughter Emma who is adorable, loveable and a true fighter!