painful horrible got a deal with it said
me it's what she bought supplies a cool
tech because it had enough is a very
complex condition and again we didn't
know how long it would be with also long
you will be with us I'm all right people
being there it's just when they walk
past the niche keep stirring sometimes I
show with a move in bed cuz I'm really
sore everywhere so painful everyday 24/7
ok as soon as I'd given birth they could
tell there was something wrong
he had no skin on his feet silent was
just flat this has recessive dystrophic
generalized severe the recessive ease
from both of the parents affects him
everywhere and internally as well
it gets my blisters in his 4x brought
some close up for him just swallowing
tongs fused to the bottom of his mouth
obviously it's all his fingers and toes
are fused so yeah internal is worse
because yesterday heart scans cause it
can affect his heart as well Rhys has a
rare life-limiting an agonising skin
condition called epidermolysis bullosa
or EB which causes skin to become very
fragile and can blister or tear and even
the slightest touch it's estimated there
are 5000 people living with EB in the UK
currently there's no known cure
Rhys was born with the condition and has
been living with the effects ever since
he has protective dressings all over his
body to prevent infection and as soon as
blisters arise they are popped with a
sterile needle he has a bath once a week
to fully clean his rooms and all of his
dressings are then
I know I need the bath source dressing
change because of her so I am not there
so I know I need it when I'm having it I
think of the goodness when I'm finished
because I feel a lot better
it's been like this for quite a few
months now a bit down in the dorms
I think he's got slash know where he
came he's realizing that things are
difficult for him to do that
Kuwait with his friends and stuff ah and
did were just one night he was in so
much pain he said me it's a swishy look
the butterflies are going take because
he daddy knows that was that was
happening there were nothing I could say
to make you feel better today we're
joining Reis at his school as new
students start the school year September
can be a particularly tricky time for
him I'm all right people being there
it's just when they walk past and they
keep stirring I think I try ignoring but
it just does not manage it doesn't work
so what's your favorite lesson I'm
rocker I mean we learn about lot of
animals and we get to look after some
animals as well we've got some snakes
and hamsters some guinea pigs and we're
looking at getting some of the fish if
we've developed any blisters during the
day and trade on how to take the blister
down to relieve the pain
why would job is to make sure that he's
happy and if in school I can help and
that's my job Dom students at rhesus
school have been learning about genetic
disorders they decided they wanted to do
something to help we heard about a
charity called jeans for genes to help
people with genetic diseases so we made
a few different ideas and this charity
loop we decided was the best idea and
then a few of us decided to stay behind
after school and make them the students
here are fantastic reliefs they support
him they want to get involved in
everything he started in 2017 there's
quite a shy young boy we've worked
really hard Lee Read's to make sure that
he's confident safe and happy here
students are selling badges to raise
money for Reese for the heart and soul
into making them and it shows that
you're one of us and I was standing here
Rhys is preparing to celebrate his
birthday how excited are you to be
turning 40 don't know miss realistic age
and 14 we were talking just now about EB
being a life limiting condition so for
you to reach another birthday
what does that mean to you feels and
it's another year I've gone through
Ivysaur holiday every year but a public
appeal for birthday cards by Reese's mum
has lifted his spirits we've had nearly
18,000 cards now and he's had hundreds
upon hundreds of presents never didn't
expect anything you know our justic just
a card at Mandy's there you know what
the people are sent present so just made
these they're even more briefs keep
smiling and don't give up hope that one
day things will get better for you it's
not nice yeah I know that people
actually do care about my condition on
that it's been feel a lot better