Long before Bertrand was born, Matthew and I would engage in lively discussions about human genetics--our own in particular. Bertrand has rekindled a lot of those discussions with an added dimension: given the genetic nature of his disease, how do we prevent another child (sibling or cousin) from suffering like he has? Well, it's amazing what a few years can accomplish. Genome typing cost in the neighborhood of $3 billion in 1998. It's fallen by about a factor of 10 each year since then. Now, you can get the most relevant chunks of your genome scanned by 23andMe for just $399.
This opens the door to scanning yourself for predisposition to all kinds of diseases: cancers, diabetes, neurological disorders, heart problems, rare genetic conditions, etc. In some cases, you could get decades to take preventative action to either eliminate or delay the onset of symptoms. Or, if you're the co-founder of Google, and you find you're likely to get Parkinson's, you can throw a few billion dollars at curing it. ;)