A heartbreaking movie of Brody Curtis reveals the little boy
crying in agony as his physique adjusts to the water due to a
uncommon pores and skin situation he has had since beginning.
His mum Heather uploaded footage of her son in a medicinal
bathtub, his pores and skin bandaged to boost consciousness of
epidermolysis bullosa (EB) – a life-limiting pores and skin situation
that has plagued her son’s childhood.
However the footage has been given a graphic content material warning by
administration and sparked a debate over whether or not Heather is a
good mom or must be vilified.
(Picture: PA Actual Life/Heather
Heather mentioned: “I hardly present any of the dangerous issues associated
“I am all the time posting cute and humorous movies of Brody as a result of I
love sharing that a part of him with everybody, however solely these
closest to me have ever seen the terrible aspect of EB.
“I can clarify in phrases or present footage of him till I am blue
within the face, however nobody actually will get it till they see him
with out bandages, uncooked and open.
“I simply felt it was time to actually see the dangerous aspect of EB. It
was by no means my intention for the video to take off.
“However there are thousands and thousands of people that didn’t find out about EB a
week in the past that do now.”
Medical doctors recognized Brody with EB in Could 2011, when he was born
lacking pores and skin on his arms, legs and toes.
There are a number of several types of EB and Brody suffers from
dystrophic epidermolysis bullosa, that means his physique is
lacking collagen 7, which is chargeable for holding the pores and skin
(Picture: PA Actual Life/Heather
Heather, a Maths trainer from Charlestown, Indiana, mentioned:
“Medical doctors mentioned to consider it as Velcro being between every layer
of pores and skin, holding it to the others.
“Brody is lacking that Velcro, so his pores and skin layers are mainly
simply mendacity on prime of one another as an alternative of being connected.”
Relying on the sort, the prognosis for kids with EB –
also known as
butterfly children due to their fragile pores and skin – may be
For instance, in keeping with the NHS, 40% of kids with
epidermolysis bullosa – one of many rarer sorts – won’t
reside to see their first birthday, and most won’t survive
greater than 5 years.
Heather mentioned: “Listening to our little one has an incurable situation
that can 99% seemingly kill him earlier than he reaches 20 was
devastating. Our hearts broke.
“However we have gotten higher at coping with it over time. We strive
to remain optimistic and act sturdy and giggle for Brody, as that
will replicate on him and preserve him more healthy and stronger for
Brody’s days are a cocktail of remedy, antibiotics and
ointments, all battling to assuage his ache.
He takes round 12 tablets each day and is bandaged from the neck
down and positioned in a medicinal bathtub 3 times every week.
Relying on how co-operative he’s being, Brody’s bandage and
bathtub routine can take upward of 4 hours.
His situation means he can not stroll, stand or crawl and he can
solely attend college for half a day 3 times every week.
On prime of this, the household go to Cincinnati Kids’s Hospital
in Ohio between 10 and 20 occasions a 12 months, the place Brody undergoes
an in depth string of therapies together with blood transfusions,
pores and skin grafts and throat dilations.
They’re additionally exploring a handful of different therapies and
have been in touch with Stanford College in California
a few trial they’ve been working on adults with the identical
variation of EB as Brody within the hope that they are going to broaden
their work to assist kids too.
Actual Life/Heather Curtis)
Regardless of dwelling with such a painful situation, Heather mentioned
Brody is happier than most individuals she meets.
She mentioned: “He is so sturdy – stronger than most of us will ever
must be – and candy.
“He laughs on a regular basis and loves enjoying on his scooter and
“If docs, nurses and hospitals are concerned, he’ll get
anxious, however for essentially the most half, he is fairly simple going.”
After importing the heart-wrenching video of Brody, which has
now been shared greater than 80,000 occasions, Heather was contacted
by folks from everywhere in the world.
Although Fb are unable to touch upon particular person circumstances,
their group tips state that movies with the potential
to shock, offend or upset could also be issued with clickable warnings
which ask customers: ‘are you certain you need to see this?’
Content material with such warnings isn’t accessible to customers below 18
and won’t play routinely.
Sadly, peppered among the many outpouring of help for Brody had been
various merciless messages from Web trolls.
Heather mentioned she has obtained threats and been referred to as a
horrible mom, with some even suggesting she hand over and
enable her son to die.
She mentioned: “I would like to inform everybody to perform a little analysis
earlier than being crucial or attempting to talk about one thing they
know nothing about.
“As an alternative of a commenting in a adverse manner, ask questions –
that is all it should take to grasp why I’ve to wash Brody
and that I posted the video to boost consciousness.
“Those who felt all I needed was Fb likes and views are
too superficial to have an understanding of EB and what it is
like as a mum or dad to have a baby with this horrific situation.
“Some threatened to name little one safety on me or thought I
was pouring sizzling water on him intentionally to make him cry. Of
course, I do not suppose it is enjoyable to place Brody via hell, however
it must be accomplished to save lots of his life.”
Heather and her household have arrange a GoFundMe page called Blessings for Brody to
assist together with his medical prices.
Since her video went viral, donations have been pouring in.
Reflecting on EB and the affect it has had on her son, Heather
mentioned: “EB impacts every thing a standard individual would take for
granted. As soon as, Brody tore all of the pores and skin on his ear simply by
taking his shirt off – most individuals do not have to fret about
“80% of his legs and toes are lined in deep, painful open
wounds so he makes use of a scooter or wheelchair to get round. He
additionally hardly ever eats by mouth. A feeding tube will get nearly all of
his vitamin via.
“They name EB the worst illness you’ve got by no means heard of, however to
me it is the worst illness that exists.
“I’ve had lots of of people that’ve seen the video ask what
they’ll do to boost consciousness and cash for analysis. That is
precisely what the EB group wants – the publicity.
“Hardly anyone is aware of what it’s and that desperately must
Kelsea Little, Media Director at GoFundMe mentioned: “Heather’s
GoFundMe marketing campaign for little Brody is extremely inspiring and
it is wonderful to see the help of her associates, household and
group who’ve rallied collectively to donate in direction of this
“We’re very pleased to have the ability to present a platform that permits
Heather to get nearer to her aim and to proceed his care.”
To assist Brody, go to this website.