Our two daughters Katelyn (14 years old) and Madelyn (12 years old) both have a rare genetic disorder on their first Chromosome. This disorder has no name and no known information since they are the only two documented cases in this specific location on the Chromosome. They are both non verbal, non ambulatory and full care from head to toe. They both have epilepsy and have seizures on an everyday basis.
Our daughters have countless health issues and have an extremely fragile life. We cherish each and everyday and try to give our girls tons of experiences out in the community. A Kid Again has allowed us to experience so much, many of them ones we would never seek out because of our children’s health status. But each of these Adventures help us to leave behind our daily challenges and puts us in a spot of “normalcy” and the feeling that our kids are like any other typical healthy kid…if not just for the day.
Adventures allow us to leave behind our sickness and have a fun and silly day together. Even as parents we get to be silly and let our worries go, truly plugging into our precious girls!
Experiencing Adventures as a family surrounded by other families in very similar situations makes the Adventure so unforgettable. We are beyond thankful to have this time to share with our girls and the other children who share similar issues… these year round Adventures allow us to just to stop and put all of their illnesses on “hold” for a moment to just be “A Kid Again” and nothing else!