the parents of disabled children face an entirely unique set of obstacles when
entirely unique set of obstacles when
entirely unique set of obstacles when raising their child hi I’m Rebecca
raising their child hi I’m Rebecca
raising their child hi I’m Rebecca Brayton and welcome to watchmojo.com and
Brayton and welcome to watchmojo.com and
Brayton and welcome to watchmojo.com and today we’re speaking with journalists in
today we’re speaking with journalists in
today we’re speaking with journalists in brown about his son Walker the boy in
brown about his son Walker the boy in
brown about his son Walker the boy in the moon so why don’t we start by having
the moon so why don’t we start by having
the moon so why don’t we start by having you tell us about Walker and about your
you tell us about Walker and about your
you tell us about Walker and about your book the boy in the moon is the story of
book the boy in the moon is the story of
book the boy in the moon is the story of my son Walker who has a very rare
my son Walker who has a very rare
my son Walker who has a very rare syndrome called CFC syndrome that’s 120
syndrome called CFC syndrome that’s 120
syndrome called CFC syndrome that’s 120 people in the world so that makes it one
people in the world so that makes it one
people in the world so that makes it one of the rarest syndromes there’s a wide
of the rarest syndromes there’s a wide
of the rarest syndromes there’s a wide range of disability but in walkers case
range of disability but in walkers case
range of disability but in walkers case he’s very severely disabled he can’t
he’s very severely disabled he can’t
he’s very severely disabled he can’t talk he can’t swallow so he can’t eat by
talk he can’t swallow so he can’t eat by
talk he can’t swallow so he can’t eat by mouth so he’s spent by a little valve in
mouth so he’s spent by a little valve in
mouth so he’s spent by a little valve in his stomach he we don’t know how well he
his stomach he we don’t know how well he
his stomach he we don’t know how well he sees her here so he can see and he can
sees her here so he can see and he can
sees her here so he can see and he can feel with his hand his most developed
feel with his hand his most developed
feel with his hand his most developed senses in his touch he was very hard to
senses in his touch he was very hard to
senses in his touch he was very hard to raise him we didn’t know what he had for
raise him we didn’t know what he had for
raise him we didn’t know what he had for two years and then when we did find out
two years and then when we did find out
two years and then when we did find out what he had we discovered nobody knew
what he had we discovered nobody knew
what he had we discovered nobody knew anything about it I was a new center it
anything about it I was a new center it
anything about it I was a new center it was a random genetic mutation it just
was a random genetic mutation it just
was a random genetic mutation it just happens in one pair of three billion
happens in one pair of three billion
happens in one pair of three billion paired nucleotides in the human genome
paired nucleotides in the human genome
paired nucleotides in the human genome so it’s a very it’s a mystery story it’s
so it’s a very it’s a mystery story it’s
so it’s a very it’s a mystery story it’s like living a mystery story explain to
like living a mystery story explain to
like living a mystery story explain to me what it’s like raising a handicapped
me what it’s like raising a handicapped
me what it’s like raising a handicapped child it can wreck your relationship it
child it can wreck your relationship it
child it can wreck your relationship it costs a lot of its it’s very expensive
costs a lot of its it’s very expensive
costs a lot of its it’s very expensive it’s you know exhausting I mean I didn’t
it’s you know exhausting I mean I didn’t
it’s you know exhausting I mean I didn’t write a big project for a long time
write a big project for a long time
write a big project for a long time because i was you know up every other
because i was you know up every other
because i was you know up every other night for ten years and and it’s
night for ten years and and it’s
night for ten years and and it’s isolating how do you think society as a
isolating how do you think society as a
isolating how do you think society as a whole treats and views disabled people I
whole treats and views disabled people I
whole treats and views disabled people I think we do our best to help them but we
think we do our best to help them but we
think we do our best to help them but we do a terrible job because we’re afraid
do a terrible job because we’re afraid
do a terrible job because we’re afraid of them I mean like I spend a lot of
of them I mean like I spend a lot of
of them I mean like I spend a lot of time around disabled people and I’m
time around disabled people and I’m
time around disabled people and I’m still terrified every time I go into a
still terrified every time I go into a
still terrified every time I go into a group of them you know though whooping
group of them you know though whooping
group of them you know though whooping and the beeping and the noises they make
and the beeping and the noises they make
and the beeping and the noises they make the teeth in the face that is so
the teeth in the face that is so
the teeth in the face that is so upsetting either we think I don’t want
upsetting either we think I don’t want
upsetting either we think I don’t want to think about the disabled or we think
to think about the disabled or we think
to think about the disabled or we think we have to cure them and fix them
we have to cure them and fix them
we have to cure them and fix them immediately and so we have this weird
immediately and so we have this weird
immediately and so we have this weird thing where everybody’s got to be normal
thing where everybody’s got to be normal
thing where everybody’s got to be normal it makes it harder and more complicated
it makes it harder and more complicated
it makes it harder and more complicated more expensive to do that what
more expensive to do that what
more expensive to do that what could do is create communities where
could do is create communities where
could do is create communities where they could be who they are and make this
they could be who they are and make this
they could be who they are and make this hard to discern subtle but very
hard to discern subtle but very
hard to discern subtle but very important contribution nevertheless the
important contribution nevertheless the
important contribution nevertheless the book doesn’t offer a definitive answer
book doesn’t offer a definitive answer
book doesn’t offer a definitive answer to the struggle do you think you’ll ever
to the struggle do you think you’ll ever
to the struggle do you think you’ll ever find one no no i don’t i don’t think i
find one no no i don’t i don’t think i
find one no no i don’t i don’t think i will ever know for sure what the value
will ever know for sure what the value
will ever know for sure what the value of his life is or how much value Lee
of his life is or how much value Lee
of his life is or how much value Lee added or detracted from mine I don’t
added or detracted from mine I don’t
added or detracted from mine I don’t think I will ever really know if I
think I will ever really know if I
think I will ever really know if I totally described what it was to be him
totally described what it was to be him
totally described what it was to be him as a human being but I don’t think
as a human being but I don’t think
as a human being but I don’t think anybody does you know I mean I keep
anybody does you know I mean I keep
anybody does you know I mean I keep people say well why did you write a book
people say well why did you write a book
people say well why did you write a book about a handicapped kid you know I mean
about a handicapped kid you know I mean
about a handicapped kid you know I mean it’s so depressing and I said well you
it’s so depressing and I said well you
it’s so depressing and I said well you know actually I’m not really writing
know actually I’m not really writing
know actually I’m not really writing about a handicapped kid I’m reading
about a handicapped kid I’m reading
about a handicapped kid I’m reading about a human being thank you very much
about a human being thank you very much
about a human being thank you very much pleasure
”
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