A heartbroken Bolton mum cannot kiss or cuddle her young son as every time she does his skin falls off.
Little Rhys Williams is covered from head to toe in agonising blisters, leaving him in too much pain to even be hugged by his mum.
The brave eight-year-old, from Bolton suffers from a severe skin condition epidermolysis bullosa (EB) – an excruciatingly painful condition which causes blistering and leads to open wounds.
His condition is incurable and causes his skin and internal body linings 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 stop the pain and it takes him three hours to have a bath.
Image courtesy of Mercury Press, with thanks
Mum 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, who attends Johnson Fold Primary School, Bolton, has suffered with the condition since birth.
The injuries prevent Rhys from hugging his parents Tanya and Mark, 45, and sister Teegan, 18 months, as he has to be wrapped in bandages round-the-clock to protect his wounds.
Image courtesy of Mercury Press, with thanks
He is also unable to play outside with friends, go on holidays, attend birthday parties and even go shopping in public with his mum.
Tanya 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.”
Image courtesy of Greater Manchester Fire and Rescue Service and Mercury Press, with thanks
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 spends every living day in agony but his dream came true when he was treated to a memorable day by kind-hearted firefighters at Bolton Central Fire Station.
Rhys was given his own fire safety gear after being made an honorary firefighter for the day as he barked out orders to his colleagues as he 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 firefighter for the day and put him in charge.”
Image courtesy of Mercury Press, with thanks
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, revealed just how traumatic the condition can be for sufferers.
Ben 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.
“EB is an excruciatingly painful genetic skin blistering condition which is caused by a breakdown in the natural proteins that hold the skin and internal membranes together.”
“We continue to offer specialist care and support to people and families affected by the condition and hope pioneering research can find effective treatments for EB.”
Tanya is also hoping to raise awareness about his condition, as well as donations to help Rhys achieve his other goals.
To pledge to Rhys’s fund, visit: http://www.gofundme.com/61uaqs.
Rhys’s Bucket List
1. To get my CD released for charity (Butterfly Boys).
2. I would love to take a trip to Spain (a charity is hoping to organise this for next year) .
3. My big sister to be treated like a princess for the day.
4. Swim with dolphins.
5. I would like to go to Florida again but only for a relaxing holiday (the family is fundraising for this).
6. To meet One Direction and Olly Murs.
7. I would like to play football with the Liverpool players.
8. My mum and dad to get a special treat.
9. To meet my Auntie Helen who lives in Australia. (I have spoken to her many times but we have never met).
Story via Mercury Press
Images courtesy of Mercury Press and Greater Manchester Fire and Rescue Service, with thanks
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