I’ve finally finished reading “The Cure” by Geeta Anand. I got it last Monday and started reading it. If I didn’t have to work and do other things I would not have put the book down. I wanted to finish it as soon as I could. For the simple reason that this story is part of the “world” that I live in. The Pompe world.
There has been some debate in the Pompe community about this book. Somehow this book has been quite controversial.
“The Cure” is about the tale of the Crowley family’s quest to find a cure or treatment for Pompe disease. In the forefront of this struggle is John, the father of Megan and Patrick, who both happen to have Pompe’s disease. John is married to Aileen and they have another son, John Jr. their eldest. He’s not affected by Pompe.
When Megan was diagnosed to have Pompe’s disease, this started, what would be a roller coaster ride for the Crowley family in their quest to find a treatment. Up, down and sideways their lives went. One battle after another.
The book starts out during John’s graduation from Harvard Business school. Megan has just been born and their lives is looking to be the picture perfect american family. A man on the way to the top, loving wife and two beautiful kids (Patrick has yet to be born). Everything seemed to be going well. Armed with his new MBA, John was going to make sure his family would have a comfortable life.
Tragedy then struck. Megan was diagnosed to have Pompe’s disease. Their world came crumbling down. Patrick had been born a year later. He seemed like a healthy baby but after some time he would also be diagnosed with Pompe.
One child with Pompe is devastating. Siblings, well words can not explain, the anguish that a parent must feel. Being a Pompe patient myself, I have an idea how hard a life it can be.
Never wanting to give up on his children, John set out on a quest to find a “cure” for his kids. This would take him on a journey that will last several years. To this day, while Megan and Patrick are receiving enzyme replacement therapy (ERT) John is continuing to find a better “cure” for his kids.
I won’t be going into much detail about the book. I don’t want to spoil it for other people. While it’s a true story and people know about it, I still wouldn’t want to spoil the enjoyment of reading the book yourself and finding out how it turns out.
Now, what do I think of this book? Being in the Pompe community, I’ve heard different sides to the stories and events presented in this book. Still, I’m not personally privy to most of important events that transpired here so I can’t for certain say which is true and which is not.
There are people who are not very happy on how John went about finding a cure for his children. Some might even say that some of his actions were unethical and did more harm than good to his children and other Pompe patients. The book didn’t depict him to be the perfect father, the knight in shinning armor who saved his little princess. The book portrayed him and his flawed character.
I’ve had the chance to meet John once during a trip to New Jersey on November 2001. I met Aileen and Megan too. I visited the Novazyme office in Princeton New Jersey. I spent about an hour or so with John and the other employees of Novazyme. It had been a good visit. From what my meeting with him, he seemed like a nice man. However, that meeting was brief and not enough to get an accurate assesment of the type of person he is. Sometimes it takes a lifetime to get to know people. At least the real person inside.
There are parts of the book that I don’t necessarily agree with or believe. Particularly on how Randall and Marylyn House have been portrayed. Randall and Marylyn House are the parents of Tiffany, a girl (now woman) affected with Pompe as well. They started the AMDA or Acid Maltase Deficiency Association. Acid Maltase Deficiency is also another name for Pompe. The AMDA through the personal resources and finances of the House family pushed for moving the Pompe community forward. They have been credited as the people responsible for putting together all the worlds foremost Pompe experts to meet with each other and start collaborating in finding a way to combat this disease. The Pompe community owes a lot to them.
In the book, there was a confrontation between John and the Houses. First when John decided to put up a foundation of his own, and the next when John wanted to attend a conference that was meant for scientists and doctors only. The book made it look as if Randall was this rich bully. I don’t know what really happened during those events but I’m not inclined to believe that it really happened that way.
From what I know and from my interaction with Marylyn and Tiffany through email and other forms of communication, they don’t strike me as “bully” type of people. In fact a lot of people owe a debt of gratitude to them. If it were not for the AMDA I don’t think we would be where we are today. The AMDA pushed a lot for the advancement of the whole community. So in this aspect I think the book was unfair to them.
As a whole the book is an interesting read. Do I agree with all the facts, no. It is nice though to read about the other events that I did not know about. Of course this is just one version of the story. There are others and maybe in the future I will get to know the other stories.
This is a tale of one family’s struggle to fight Pompe. It’s not a picture of what happened with the whole Pompe community. It’s just part of it. There are other people in the Pompe community who also have stories to tell. Other people who’s contribution is immeasurable in terms of how it affected the Pompe community as a whole. I wish that their stories can also be told.
Whether or not you’re in the Pompe community or not, the book is still worth reading. It’s well written in the sense that it’s an easy read and the pacing is good. Are the facts all correct, hmmm.. I can’t really say. Like I mentioned this is just one side of the Pompe story.
At the end of the day, while some people say that what John did wasn’t totally good, personally I can’t blame the guy. When the lives of your children are at stake you’d do anything for them. In that aspect, I understand his actions. Do I agree with what he did, no totally. But I can understand why he did it.
If you get a chance, get a copy of the book. The writer promised that 10% of the profits go to the MDA or Muscular Dystrophy Association which I think will earmark it to support Pompe programs.