Thoughts: Yet another book I was drawn to through Richard Fidler's Conversation Hour. Stephen and Sally Damiani's world was turned upside down when their first born child, Massimo was diagnosed with Leukodystrophy. The problem with Leukodystrophy is it has many variations - lots of them unidentified. Massimo had one of these forms. So the Damiani's set to work. Sally became responsible for managing Massimo's day to day care - therapies, medications, appointments - and Stephen became responsible for find a cure. OK, that may be a little dramatic, but he immersed himself in research to determine exactly what variation of the disease Massimo had and therefore develop effective therapies and treatments.
This book is a great example of what can happen when you are not constrained by the conventions of a job or industry. When you are not part of the machine, you do not see the reasons something can't be done. You see the reasons why it should and set about working out how.
The Damiani's were lucky in several ways. Whether you believe it to be fate, divination intervention or just plain coincidence, they met several people on their journey who were not only able, but willing to help them in their quest. From being able to ask questions, to mapping Massimo's genome, to finding someone who understood how to read that genome, the Dimaini's ended up with an army of people on their side.
Cracking the Code is a fairly easy read. It's not bogged down in scientific jargon and at the heart of it is a pretty cute kid. Every parent will feel for Stephen and Sally. As a parent I was in awe of their determination and drive, but wonder is it any less than I would have done for my kids. I see a lot of my husband in Stephen - if there is a problem you work out how to fix it. While it's not discussed in the book (and nether should it have been), the Damiani's obviously had access to some financial support or fund as much of what they did was not cheap and not publicly funded. They also had the education level and intelligence to fully understand what needed to be done and to further educate themselves. I'm assuming not everyone is able to teach themselves genomics in the way Stephen did! This is the type of thing that makes you wonder if certain things happen to certain people for a reason. Yes, I know it's horrible to do this to your child - says the universe - but I know you have the resources, knowledge and drive to help him and through that so many other children. And the Damiani's and their team have. They identified Massimo's variation. They have developed treatments that help. They have a little boy they expected to be dead by 2 going to school. They have saved other parents the anguish of not knowing exactly what is wrong with their child. They have proven the importance of genomics in diagnosing rare illness.
Cracking the Code is at it's very heart a feel good story. The triumph of hard work and determination and love. The Damiani's and Massimo have a long way to go, but their journey so far is well worth reading about.
Cracking the Code gets 3 stars
* Did not like it
** It was OK
*** Liked it
**** Really liked it
** It was OK
*** Liked it
**** Really liked it
***** It was amazing
