By Lisa Cypers Kamen.
If you want to find a story of courage, then you should definitely read Chasing Miracles by John F. Crowley. In it, he talks about his family’s tumultous journey with their children, two of which have a form of Muscular Dystrophy known as Pompe disease. These beautiful children, Megan and Patrick, are an inspiration.
The book is divided into three parts: strength, hope, and joy. Chapter two is what helped me come up with the title of this blog, because the family’s motto is “Never, never, never quit.”
Their story focuses on determination, faith, hope, love, and a desire to not only help their kids survive their challenges, but to help them thrive as well. This family is not unique in their determination to help their kids – they are just your “average” American family. It’s their stories, and the wonderful way in which they way they are told, that makes them unique. This is also, at the same time, what makes them inspirational–not only those who have children with special challenges, but also to those who don’t.
What would you do if your kids were medically fragile and could die? Would you do everything in your power to save them, knowing at the same time that their condition could not be permanently reversed? In the Crowley case, they were surprised when some of the effects of Pompe were in fact reversed, namely, Megan and Patrick’s enlarged hearts. But some of the symptoms, sadly, remain.
What is most amazing is that in the midst of this, the kids have an unstoppable, bright spirit of determination that is infectious. Here is one important thing to remember: Pompe does not affect mental ability in any way, making those who have it intelligent people who can dream anything for themselves as far as a career goes.
Just remember… never give up!