Review
This was okay. It presented a good amount of information about an illness few people have heard of and even fewer are knowledgeable about, and hearing a first-hand account from a very brave girl and her mother really humanizes it. As a mother myself, I can't even begin to imagine what it would be like to know that one of my children lived with death sentence which meant with almost certainty that they would never emerge from their teens.
Of all the anecdotes related by Hayley and her mother, the ones which stand out the most were the ones where they had to deal with the FDA. I was particularly irritated with the FDA's attitude with regard to potential treatments. While they dragged their feet trying to decide whether or not to approve human trials, children were getting sicker are dying! I've never understood this mentality. When you're dealing with an illness that has a 100% mortality rate, there's no reason to wait. They're going to die without treatment, and if there's a possibility that a treatment will prolong life or lessen symptoms, then give them the treatment!
My only complaint about the book is that it was obvious that neither Hayley nor her mother have any background in writing. Even with the assistance of a ghost writer, it still felt as if it might have been a first, rough draft in need of serious editing and polishing.
Of all the anecdotes related by Hayley and her mother, the ones which stand out the most were the ones where they had to deal with the FDA. I was particularly irritated with the FDA's attitude with regard to potential treatments. While they dragged their feet trying to decide whether or not to approve human trials, children were getting sicker are dying! I've never understood this mentality. When you're dealing with an illness that has a 100% mortality rate, there's no reason to wait. They're going to die without treatment, and if there's a possibility that a treatment will prolong life or lessen symptoms, then give them the treatment!
My only complaint about the book is that it was obvious that neither Hayley nor her mother have any background in writing. Even with the assistance of a ghost writer, it still felt as if it might have been a first, rough draft in need of serious editing and polishing.
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