A mother cannot kiss or cuddle her
young son because every time she does his skin blisters and falls off.
Rhys Williams is covered from head
to toe in agonising blisters, leaving him in too much pain to even be hugged by
his parents.
The brave eight-year-old, from
Bolton, Greater Manchester, suffers from a severe skin condition called
epidermolysis bullosa (EB).
It is an excruciatingly painful condition which causes blistering and leads to open wounds.
WARNING GRAPHIC CONTENT:
It is an excruciatingly painful condition which causes blistering and leads to open wounds.
His condition is incurable and causes
his skin and internal tissue to blister at the slightest knock or rub, leaving
him with painful open wounds.
The agony is so severe the youngster
even had to take morphine to control the pain and it takes him three hours to
have a bath.
His mother, and full-time carer, Tanya Moores, 30, said: ‘I feel like the worst mum in the world when it comes to bath time - it’s utterly traumatising to see him screaming and writhing in pain.
‘And to know I can’t cuddle him
better in case the friction tears his skin off is heart-breaking.
‘He had to take morphine at one
stage to cope with pain but he’s such a little fighter that he refuses to take
any painkillers these days. Occasionally he will have a standard paracetamol.’
Rhys has suffered with the condition since birth
and has to be wrapped in bandages constantly
He is unable to play outside with
friends, go on holidays, attend birthday parties and even go shopping in public
with his mother, father Mark, 45, and sister Teegan, 18-months.
He also has to be fed through a tube
as eating solid food can cause his gullet to blister.
Ms Moores said: ‘It’s getting to the
stage where he’s too embarrassed to go out with me as grown adults just stare
open-mouthed at him.
‘In the past he’s said, ‘Mummy
please cover me, that woman’s staring’, and I lost my cool.
‘I’m fed up with rude remarks, one woman even told me I was out of order for letting him near a kettle because she thought he’d burnt himself.
‘There’s not enough awareness about
his condition and that’s what I hope to change.’
After hearing about two young boys
who died from the same condition, Rhys wrote a heart-wrenching bucket list
including sending his parents away on holiday and making his sister a princess
for the day.
Rhys was recently also treated to a
memorable day by kind-hearted fire fighters at Bolton Central Fire Station.
Rhys was given his own fire safety
gear after being made an honorary fire fighter for the day as he barked out
orders to his colleagues and let loose with the hose.
Station Manager Steve Parkinson
said: ‘We wanted to give him a day to remember at the fire station and I know
it was a complete surprise to him.
‘He had no idea and arrived with his
mum in a blindfold, and when he took it off he was in front of the fire engine
with White Watch lined up on parade and his little face lit up.
‘We made him an honorary fire
fighter for the day and put him in charge.’
The family currently have to travel
200 miles to Birmingham Children’s Hospital for regular check-ups, as well as receiving
support from specialist EB charity DEBRA.
The group’s chief executive Ben
Merrett, who has worked with the family since Rhys was first diagnosed with
dystrophic epidermolysis bullosa, revealed just how traumatic the condition can
be for sufferers.
He said: ‘Imagine endless rounds of
changing dressings, lancing blisters and cleaning the open wounds that develop
all over your child’s body.
‘This is the reality faced by many
families just like Rhys’ who are affected by EB.
am already crying God have mercy
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