eebee has definitely affected my
everyday life I basically need help with
everything
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hi my name is John Hudson Dylan I'm just
worn July 20th 2002 and I'm 15 years old
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I'm here you ready all right let me go
get everything set up this condition
that I have we refer to as EB what is
more known as epidermolysis bullosa I
was born with it I'm missing a part of
my body that's called collagen 7 and
it's basically what holds the skin to
your body
when most people you know bump into
someone nothing really happens but
bumping into someone for me my skin just
shares right off any type of force or
any friction especially when I scratch
and I get itchy causes a big wound my
whole body is covered in bandages John
Hudson takes a variety of medications
twice a day and so I have a checklist of
everything he takes this morning which
include probiotics sodium because his
sodium is low so this was the neurontin
for the nerve pain and they eat MLS of
that and then I'm also gonna make for
later extra doses of dilaudid because
he's going to want them after the bath
and then they're ready for him he takes
dilaudid for pain every four hours
during the day
yeah John yeah
and when you're done I've got your meds
okay so the plans right now include find
it making a new bathroom for John Hudson
with the new table we're hoping that we
can make it a reality for him ready for
you Beth I would say about ninety-five
percent of his body is covered in open
wounds John Hudson needs treatment every
day around the clock increase the
morning to that message okay because I
didn't stretch my fingers enough my
fingers are kind of fused into these and
I can't straighten them all so my my
hands are very bent they're basically
all fused together and I can't use much
of it so what mommy said you slept all
night the tub that he has is a special
tub it has micro silk it's like little
bubbles research has shown that it
increases tissue growth when he has to
take a bath it has he knows it's going
to be painful and yet he knows he needs
to do it when I take a bath the pain is
just it's horrible I mean I hate having
to get in that water
but yeah I know it's gonna help my skin
so I have to get in there well what I
could do is this open this door right
and then you're gonna be blocked so let
him see me cutting you back I'm like the
bad one cuz I give him his baths every
day what he needs it I get emotional
when I talk about it but um he's yeah
he's in a lot of pain
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that was pretty devastating to the
beginning you gotta try it again in a
little
we got educated very quickly on what did
what this was all about every time I
think about it it still upsets me you
know it's it's not really just the
physicalness of it it's more as well
it's just so stressful sometimes I make
plans with my friends and once the baths
done I'm really just stuck up here all
day because I'm in so much pain it's a
struggle but I got a hope that it will
be better eventually John waits all year
for spring and summer seem to get weepy
the floats from the ice cream trip looks
good John Watson's personality is
amazing for someone in his situation
even if he's in pain he'll still try to
you know be positive he's like a kind
soul she's a dog I don't think there's
any type of surgery that would make
when I got into motivational speaking at
first I didn't even think of it as that
I to me it was talking about the truth I
usually get to meet a lot of people with
E because we hold a lot of events to
raise money for research I'm not the
only kid with EB out there I gotta tell
the truth about what's going on with EB
kids and when I did that it was getting
the word out to people
jonathan is a very outgoing personality
he's very friendly he's very funny
he just he makes me laugh continuously
even though I have this condition I hope
that someday I can grow up and be like
my parents because my dad's a teacher
and my mom is a therapist so I wanted to
be able to like do something where you
know I'm helping people sounds good to
me
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you