the day Brady was born I had invited a
friend of mine who takes photos to come
capture the experiance Chris it was
going to be his job to tell me whether
it is a boy or a girl
and he just looked up at me with this
very strong loving smile and just said
it's a boy
the look on our doctors face and of
those in the room were just they were
kind of speechless and because he had no
skin on his feet they told me they
wanted to take him and it was just in in
seconds and moments they reacted so
quickly and I just remember looking at
Chris and saying I need to hold him and
they handed him to me and let me kiss
him and said you have about 30 seconds
and then we need to get him downstairs I
looked at his face and he was in pain it
wasn't a normal newborn there was pain
behind it and I kissed him and I kissed
his lips and I knew in my heart that
there was something deeper that we were
gonna find out the joy was sort of
overcome by a lot of fear and our lives
changed forever they said well you know
best case scenario is he could have some
horrible bacteria or some horrible
flesh-eating virus and we're like that's
the best-case scenario
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so even if you told me ahead of time I
couldn't imagine what we were would be
going through the okay man and had a
book he read to him and yeah Leo didn't
bat an eye
you just he loved him from the start
my name's Leo my brother's Brady we play
together on Rock'em Sock'em robots and I
think the plan to get her on a race with
my new collar and raising a car
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so Brady's team consists of his team at
Children's Hospital here in Colorado I'm
also a nurse and so I'm here with him
helping guide our nurses that were
training to be his daily caregivers as
well we also have four different
therapists on board we have physical
therapy occupational speech and music
therapy that's it it's just like an ICU
all the time we do bandage changes every
few days with full baths and bandage
changes can go one two three hours or
more so it's it's you know not for the
weak of heart
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Brady's therapies we stretch open his
hands that are just closing in because
of the wounding internally in the
scarring even at age three
he has the you know body of a 70 year
old it's just time is is of the essence
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there's heartache but there is more joy
and seeing you know the strength of what
these kids can do they didn't ask to
carry this burden but they do it
beautifully
I predict baby when I can and I also
help them for when he almost gets hurt I
love my brothers so much because they
want to see and get cared I know we will
find a cure it's just a matter of time
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and so any day we can make me smile and
laugh it's a wonderful day if my friend
were to come back and take photos of us
today she would not take photos of a
family that's sad and in pain all the
time she would take photos of radium leo
playing on a swing set together and
wrestling together and maybe even
running on grass of their feet together
she would take photos of the family who
is fighting and who won't stop fighting
until we find an end to this disease
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you