Debbie's Reviews > The Memory Book
The Memory Book
Jul 03, 2016
This disease is real, and my daughter has it. She is 31 now. Only very few people with this disease live that long. As parents, we have been watching our daughter disappear from us for about 12 years now. The disease is not at all like it is described in the book. It is much, much worse. My daughter danced, was a camp counselor and loved to interact with people. Now she is confined to a wheelchair, can't be in a room alone because it's too dangerous for her and has lost her independence. It is awful and she knows what her life should have been. She has no peers as friends. We have been in touch with Lara Avery and she now realizes the book doesn't depict the illness correctly. She has been wonderful and she is taking steps to make stories about real NPC families available to you. You will need more tissues than the book. There will be a website or something, I'm not good at the computer, where our story of Rachael and other family's stories will be available. Watch for details and tell your friends. The disease is very rare and killing our children slowly, over years! We want to raise awareness of the real disease and let our stories be heard. (less) I gave it 4 starts because it's a good book. However, it is not the story of a girl with NPC. Help our family, the NPC community and Lara Avery spread the real world about NPC. Right now I don't know how you will access the website with the real stories. Keep an eye out and tell others. You can also contact me directly by going to Lara's Facebook page and asking to connect me.
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July 3, 2016 – Shelved