my motto in life is hashtag Yolo you
only live once
I just believe if you have that simple
saw you can do anything
James done was born with epidermolysis
bullosa a rare skin condition which is
the equivalent of third-degree burns my
skin just comes off and blisters and
scars with friction so it's basically a
genetic skin condition that's very rare
and very severe it's very painful there
isn't a moment that goes by when I'm not
in pain I have to have morphine every
four hours
but despite the constant pain the 22
year old refuses to let it dampen his
spirits
she just grown to be positive and the
more obstacles we face the more troubles
in life that come to you the more
positive you get and the more happier
you go you come out the end of it
smiling no matter what happens the way
James Hamels is conditioned is not just
amazing I really do I think if I was
going through that there's no way be
like him he's the most positive face and
I do now inspirationally does not
anything get in his way
eebee sufferers can have a shortened
life expectancy but James is determined
to fulfill his dreams I think he's got a
great attitude to life in terms of
making them up to life for making them
also experiences and we've got all the
land from from James example really
so far on the bucket list crossed off
quite a few things on the highest things
on my bucket list as a youngster was to
visit Las Vegas because I'm really into
magic and the Big Show's out there and
I've been there six times now been to
South Africa that was another big thing
when you achieve in something that
you've always wanted to do it just makes
you think sky's the limit sometimes you
can do anything you put your mind to
I've always wanted to like get in a
plane that's adapted so I could fly it
easily I think that would be awesome
just to be able to fly on my own with no
help from anyone else
that would be the next achievement in my
life and he keeps himself busy closer to
home as well
hello playing wheelchair football I did
play that once a week I love traveling a
little bit Netflix loved watching TV
YouTube photography really into my
photography I go out a few times a week
with a friend of mine called nock and
just do fun stuff really just get out
and do what every twenty two-year-old
does just sure have fun talk about girls
everything tails like James maintains
his positivity despite having suffered
from the condition his whole life I
first discovered James having a beer an
an it was actually born he had no skin
on his feet couple of digits were
missing the skin and also his face where
the Midwife had handled him effing Marx
had taken the skin off his face every
other day I have to change my bandages
which takes three to four hours and it's
not just a matter of taking them off and
putting them back on again
so what was the physical pain and the
hardship that way there's also a
mentally it's quite hard because you've
got to make sure you focus and you draw
the blank everything else out and you
focus on looking at my skin and making
sure it's all okay and banged injuring
the properly unsurprisingly the bond
between mother and son is strong my main
support in life is mumble she's not only
a brilliant mother but she's also a best
friend to be honest me and my mom spend
a lot of time together she'd give up
work when I was born so he called my
full-time carer she all those holy laugh
with this and like say I'm more shy and
soft I am because I tell her all the
time
but I honestly don't know how I'd live
without her I love it to bits she's the
rock of the world and I can't think of a
day without her I can't think of what
it'd be like to live without her
obviously the future in terms of what
will happen medically it's progressive
so the condition will get with my skin
get will get with little carry on scar
and it will carry on blistering and
sometimes you know people with my
condition get skin cancer so that's
probably what will end up happening to
me medically
but I've already had it once I actually
added a few months ago in December we
had it removed and now it's all gone
when people ask me you know what my
motto is or I will live life the rules
ago by and life it's hashtag Yolo
basically you only live once
just Bolivia you've only got one chance
at this life so while we're here let's
go out there all guns blazing let's have
fun along the way let's equate create
some awesome memories have some good
times and yeah everything will be good