There's a book, titled "The Boy in the Moon: A Father's Search for Disabled Son" by Ian Brown. Mr. Brown is the father of Walker Brown, a child with CFC Syndrome. Many CFC parents have been waiting for the book to come to the USA for A VERY LONG TIME.
I've got it on my kindle for Android. I'm on chapter 4, and I just have to share this with you.
Let me backtrack: When Jackson was born, his right eye was shut. He had that mass on the back of his neck and his cheek, eye, and ear were all pulled in that direction, along with his neck. Evelyn always said that Jack was born with "one eye open" and he was sick because of it.
from "The Boy in the Moon": One day, I asked [Hayley] why she thought Walker couldn't walk and talk at the age of two. 'I could walk when I was one because I was born with two eyes open,' she said. 'But Walker was born with only one eye open.' She was four."
This entire book is reality. It's my life. It's Ian Brown's life. It's other CFC parents' lives.
Jack has a low grade temperature and may not be having surgery on Tuesday.
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