Real Courage

My award for the least creative book title definitely goes to The Cure by Geeta Anand. But except for the title, this book is anything but dull. It has all the tension and drama of the best fictional thriller. In some sense it is about a killer ready to attack or a ticking time bomb. In fact it is the true story of a father in search of a cure for his two children diagnosed with an "incurable" disease. Sound familiar? It is the story on which the movie "Extraordinary Measures" is based. I like the title of the movie much more.

I was drawn to the book when I heard that the wife/mother Aileen Holleran Crowley and I are alumnae of the same college. Even though we are more than two decades apart, there is something about the bond of a small Catholic women's college that seems special. Maybe that's the case for all alumnae. Anyway, that prompted me to pick up the book...and I am glad that I did. I still have not seen the movie and I made a special effort not to look at the pictures in the book lest it give me some hint of how the story ends.

For the most part the story concentrates of John Crowley's herculean efforts to raise money to support clinical trials for a treatment of Pompe disease. In the beginning he was also trying to maintain a full time job as well. Okay, that's a lot to handle. But I kept thinking of Aileen: three children, the eldest with ADHD and the two younger ones (15 months apart in age) in wheelchairs on ventilators - and for a while with no one to help her. John would come home in the evening and complain (more than complain, really lose his temper) because she hadn't made some phone calls or followed up on something they had discussed. He does eventually acknowledge Aileen's contribution but I don't think he ever really understands her heroism. I want another book in which Aileen tells her side of the story. She is such an inspiration: so patient and resilient. It seemingly doesn't phase her to take all three children to the beach or to Disney World. Why was I exhausted from traveling with one or two healthy children? AND all of this was happening to her when she is in her 30s - so young!

If you haven't seen the movie, I urge you to read the book. We are capable of so much more than we think. There are some remarkable individuals and families out there struggling against odds that seem overwhelming.