I actually stumbled on this book for the first time in middle school, or it even might have been elementary school. I spent the night at a friend's house, and she lent me this book. "It's so sad," she told me, "It's about a little girl who dies of claustrophobia." Which was a disease we had at least heard about. In reality, Alex suffered Cystic Fibrosis, but we couldn't quite sound out. I borrowed the book from her and read it a little in disbelief.
And no, I never gave the book back. She was more of a family acquaintance and after spending the day at the pool together I went back to her house for a sleepover, the one and only time I was ever there. I ran into her years later, and let her know I still had the book. Turns out she had never read it, while through the years I read it over and over.
Alex Deford was born in 1971. When she was only a few years old she was diagnosed with CF, which at that time was practically a death sentance. (When Alex was born life expentency for a baby born with CF was only around 10 years; now it's closer to 40.) What got me while reading this book was that Alex was barely younger than me when she died. I couldn't believe that I was reading about the life of a little girl, who died 4 years before I was even born. It was one of the first books I remember reading that really made me cry.
I haven't actually reread this book since college, but I have a feeling if I read it now it would hit me differently. Previously I saw much of the book through the eyes of Alex. But if I read it now, I'm sure the perspecive that would hit me the most be the author's, who in fact is Alex's father. And I can't imagine what it would be like to ever have to bury a child.
It's not an easy book to get through, but I wholeheartedly recomend it if you're up for it.