by Margaret | 1/17/2014
" I heard about this book while listening to Science Friday last week when host Ira Flatow interviewed Doron Weber. Just what I needed, I thought, a story about a vibrant teenager who dies too young, but then at the library the book popped off the shelf, so I took it home. First, I'll say it is a compelling read. Even though every reader knows from the start that young Damon Weber will die from his effects of his illnesses, one keeps reading through each step of the terrible decline of this child. But that is not the only story here. The author, with whom one simply needs to sympathize because of his situation, turns out to be an arrogant man who squeals, not just at the horrors of the loss of his child (who does not sympathize with him there), but that such horrors could happen to him, a man so privileged and important that the world dare not allow anything untoward to happen to him. His son is clearly a gifted and spirited young man, but the father, that is another story. He is clearly full of his own importance, evidenced by his continual name-dropping and his constant attacks on others. As the head of some foundation, he is clearly used to having his enormous ego stroked by various people in the arts and sciences who need his support for their own work. Yes, his son Damon seems to be a fine actor, and I am sure Damon worked hard on his parts in school plays. It is to Damon's credit that he takes on directing a play at school even though he is too ill to be in school all day. And yes he got a part in Deadwood, but that was due to his father's influence and connections, not his own brilliant acting.
The author does challenge the doctors who serve his son, and here one has to agree that it is the responsibility of the patient (or in this case the patient's father), to do his own research and to make sure that care is going well. So many people have suffered at the hands of careless or overworked doctors; we do need to be vigilant. But the author does not stop there. His contempt for others is also demonstrated when he allows Damon and Damon's friends to read through and mock grant applications of people seeking assistance from the foundation. (Where does Weber get the chutzpah to include this crossing of boundaries?) And he is positively venomous about the rabbis who require more than one year's study in order to make bar mitzvah. Yes, Damon is bright and can learn his Torah and Haftorah sections quickly, but several rabbis apparently do not see a bar mitzvah as simply a performance, but as the culmination of some years of study and devotion to the Jewish religion. The author has Mitt Romney's tone deafness about the privilege that come with have lots of power and money. Weber does say he has to ask for financial assistance, but at the same time, he and his family manage to travel the world for years. The Webers live in a different world from the one most Americans inhabit.
So why give this book even a 3? Because although I have no sympathy for Doron Weber, the man, I have enormous sympathy for Doron Weber, the father who loses his son. Damon, who was saved as an infant and very young child by miraculous interventions by dedicated doctors, still falls victim to the diseases that afflicted him in utero and set him on his long, downhill path. Even the love of his father cannot save this child. And the death of a child is what every parent dreads. The story is by definition powerful and compelling. If only Weber had ended his book with a story or two about the scholarships given in Damon's name, instead of ending with a lawsuit against the doctors. Not that a doctor who fails to follow protocols should not be held accountable, but his own son's story is made smaller by the father's enormous anger. "