What CFC Syndrome Is

Female: The parents of disabled children face an entirely unique set of obstacles when raising their child. Hi I'm Rebecca Britain and welcome to watchmojo.com. And today we’re speaking with journalist Ian Brown about his son Walker, “The Boy in the Moon”.

So why don’t we start by you tell us about Walker and about your book.

Ian Brown: The Boy in the Moon is the story of my son Walker who has a very rare syndrome called CFC syndrome that’s a 120 people in the world. So that makes it one of the rarest syndromes. There's a wide range of disability but in Walker’s case he is very severely disabled. He can't talk. He can't swallow so he can't eat by mouth. So he is fed by a little valve in his stomach. We don’t know how well he sees or hears. He can see and he can feel with his hand. His most developed sense is his touch.

It is very hard to raise him. We didn’t know what he had for two years and then when we did find out what he had we discovered nobody knew anything about it. It was a new syndrome so random genetic mutation. It just happens in one hair of 3 billion pair of nucleotides in the human genome. So it’s a mystery story. It’s like living a mystery story.

Female: Explain to me what it’s like raising a handicapped child.

Ian Brown: It can wreck your relationship because it’s very expensive, it’s exhausting, and I didn’t write a big project for a long time because I was up by every other night for ten years, and it’s isolating.

Female: How do you think society as a whole treats and views disabled people?

Ian Brown: I think we do our best to help them, but we do a terrible job because we’re afraid of them. I mean I’ve spent a lot of time around disable and I'm still terrified every time I go to a group with them. You know the whooping and the beeping and the noises they make, the teeth and the face that is so upsetting.

Either we think I don’t want to think about the disabled or we think we have to cure and fix them immediately and so we have this weird thing where everybody is got to be normal. That makes it harder, more complicated, and more expensive to do that. What we could do is create communities where they could be who they are and make this hard to do soon subtle, but we important contribution nevertheless.

Female: The book doesn’t offer definitive answer to the struggle; do you think you'll ever find one?

Ian Brown: No I don’t. I don’t think I will ever know for sure what the value of his life is or how much value we added or detracted from mind. I don’t think I will ever really know if I totally describe what it was to be him as a human being, but I don’t think anybody does. I mean, people say why did you write a book about a handicapped kid, it’s so depressing. And I say actually I'm not really writing about a handicapped kid, I'm writing about a human being.

Female: Thank you very much.

Ian Brown: My pleasure.