I would lay in bed at night and just
think about every part of her body think
about her little feet and think about
her legs tell me furniture think about
the bandages and what how did I need to
cut something a certain way so that it
would work for that particular wound
[Music]
there you go
stand up okay what time is it how do we
do eight oh six two hours not too shabby
yeah
you
I think that when you think of a
butterfly you think of a tiny little
thing
that flies all around but it's very
delicate so you can't touch it what
about me what about me advocates I look
I'm a good student in some ways Ella is
a very typical nine year old yeah but in
other ways Ella is unlike any other kid
you've ever met and that she is a
fighter and she has to deal with a lot
that 9 and 10 year olds don't have to
deal with you prefer the oil it's not
this is the oil so it doesn't
better good morning can I hug you
Oh move your legs a little bit so I can
I hug you what I'm gonna unhook you okay
all right start getting up girlie gentle
I don't normally describe it in like a
simple way that kids can understand it's
just a disease where um Oh sorts of
different kids get scars on different
parts of your body okay what's going on
with Ella and with EB in general these
children are born without the protein
that we all have typically called
collagen seven that keeps the upper and
lower layers of our skin together intact
it's like an anchoring fiber is the best
way to describe it
so that slight friction and impacts her
skin on the exterior of course also
interior you can't get it out of your
head that the doctor told you she wasn't
going to live like when a doctor tells
you that it stays with you forever so we
held her very close her first three
years the only people who ever took care
of her were me Joe and we had a nanny at
the time
you
wake up our brains get ready thank you
have five squats hey my ask like why
were you born - lame I don't know a
chart to answer I think we wanted to
have a quality of life that's not geared
so much regimental II towards this
arrival time in class time and this time
coming home from school doing your
homework going a bit like you have to
Dutch the structure where we believe
that our health and quality of life will
be much better served by a more flexible
schedule when you have to squeeze in a
3-hour band exchange at the end of this
long school day it's hard to do and at
the end of homework right know you're on
the wrong page oh this is where your
pencil was there's no down time
you know Ella asks a lot more than you
want your own kid to ask why did God
give me Evie why do I have to have EB
the answer I always give her is
unfortunately um you need a B to change
the world that God needs you to make a
difference in this world and EB is the
way you have to do it she doesn't like
that she doesn't like that
responsibility and quite frankly I don't
like that she has to have that
responsibility I wish she could make an
impact in a different way but she can't
this is this is what she needs and I
think as hard as it is to deal with this
disease it's it's humbling to know that
your kid has been chosen to do something
great and it is important to help her in
her life accept that and own that okay
did you have the link for me to run away
from you you know I can't run away from
you you find me every time
and he says you outrun me so what are
you talking about walk type of staff
camp