A HEARTBROKEN mum is appealing for birthday cards for her disabled son who told her he’s “had enough of life”.
Rhys Williams, 13, is losing hope as he continues to battle a rare life-limiting and agonising skin condition since he was born.
His mum Tanya Williams wasn’t sure whether Rhys would ever reach his teenage years.
She is now pleading for help to save her now 13-year-old son who is confined to a wheelchair because of severe epidermolysis bullosa.
The condition results in painful skin blisters, sores and has even caused his fingers to fuse together.
Rhys, from Bolton, Lancs., says he wishes “a butterfly would come and take him away” and his devastated mum is desperate to show him he has something to fight for.
Tanya said: “The last few months, he’s had enough of life.
“He’s had enough of being in pain with the sores. He just wants to give up, he doesn’t want to fight anymore. What do you do as a mum?”
Ahead of his 14th birthday on September 21, his 36-year-old mum is asking for cards to be sent Rhys’ way in the hopes of showing him that people care.
She added: “He’s such a happy boy most of the time but recently it’s a struggle to try and get through to him. I don’t think he can fight much longer, his life depends on this.
“Rhys’ life revolves around school, Xbox, sleep, repeat. He doesn’t want to go out because he doesn’t like the way people look at him.
“I don’t want him to be in pain anymore but I still want him to be here.”
The condition causes Rhys’ skin and internal tissue to blister at the slightest knock or rub, leaving him with painful open wounds.
The last few months, he’s had enough of life. He’s had enough of being in pain with the sores. He just wants to give up, he doesn’t want to fight anymore
Mum, Tanya Williams
He is now reliant on a wheelchair as he is unable to straighten his legs due to the fusing of the skin at the back of his knees.
His frail body is covered in bandages, which have to be changed three times a day to prevent him from developing any deadly infections.
Tanya said: “His condition causes his skin to fall off or blister at the slightest touch. His fingers have webbed and his hands fused.”
His pain is so severe that he even had to take morphine to try and control it while his family are unable to hug him.
His condition causes his skin to fall off or blister at the slightest touch. His fingers have webbed and his hands fused.
He is unable to play outside with friends, go on holidays, attend birthday parties and even go shopping in public with his family.
He also has to be fed through a tube as eating solid food can cause his gullet to blister.
The family have done similar appeals before, gathering Christmas cards from Bolton residents to decorate the house and cheer up Rhys.
Last time he was treated to hundreds of festive wishes and loved getting each one in the post.
Tanya said: “Every single card he received, he opened them with so much joy.
“He came home from school and he would see these Christmas cards.
“He got hundreds at a time.
“It showed him that he still needs to fight, that there’s people out there who do care and do love him.
“Hopefully it can make him see that not everything is bad.”
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British schoolgirl Poppy, six, also has the rare genetic disorder which makes her skin blister or tear at the slightest touch.
Affected youngsters are known as “butterfly children” because they are so delicate.
And American teenager Jonathan Gionfriddo, from Stafford Springs, Massachusetts, is refusing radical treatment – because he’s afraid he’ll die on the operating table.
WHAT IS EPIDERMOLYSIS BULLOSA?
Epidermolysis bullosa (EB) is a general term used to describe a group of rare inherited skin disorders that cause the skin to become very fragile.
In people with EB, any trauma or friction to the skin can cause tears and blisters.
EB is caused by faulty genes.
In most cases these are inherited from one or both parents but sometimes the fault occurs spontaneously.
It is a result of not enough collagen being produced in the skin.
The condition is incredibly rare, affecting around one in every 17,000 children born in the UK.
It means, there are currently around 5,000 sufferers living with the disease.
There is no cure for EB, but treatments aim to relieve symptoms.
Most treatments can be done at home, such as popping blisters with a sterile needle, applying protective dressings and avoiding things that make the condition worse.
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