Hi! Have you read anything by Robert or Suzanne Massie? Together they wrote Journey which is about their son who has hemophilia. They alternate chapters telling what it's like and what can happen rearing a child with this awful disease.Robert Massie also wrote Nicholas and Alexandra the Czar of Russia whose son suffered from hemophilia. Rasputin plays a big part in their true story.I read both of these books years ago, so my memory of both has faded somewhat, but I do remember that I could hardly put Journey down. Nicholas and Alexander was also well written, but it was a bit dryer.
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