Heartbreaking vow of boy, 18, with rare ‘butterfly skin’ disease as he’s given days to live – after planning his own funeral aged 13 – as he tells his mother: ‘I’m so sorry. I’ll try to fight it’
A teenager with a skin condition so severe that a paper cut could be fatal has been given days to live after developing sepsis and has planned his own funeral.
Rhys Williams, 18, from Bolton, was born with a severe skin condition called epidermolysis bullosa (EB), known as “butterfly skin” disease. This means that his skin is so thin that the slightest impact can change his life.
The teenager lived every day with painful ulcers all over his body.
Reece’s parents were told when he was a child that he might not live to even reach double figures, and he planned his own funeral at 13 so that when that day finally came, he would be ready.
In September of this year he, against all odds, reached adulthood, but just a few weeks later he developed sepsis and pneumonia and was rushed to hospital on November 4th.
Rhys Williams (pictured), 18, from Bolton, was born with a severe skin condition called epidermolysis bullosa and was given just days to live after being diagnosed with sepsis.
Doctors said there was nothing more they could do and his treatment was stopped.
He was given end-of-life care and transferred to hospice care where he takes a range of pain medications to keep him comfortable.
Doctors warned his heartbroken family he had “days or weeks” to live and may not live to see Christmas.
His mother and full-time carer Tanya Moores, 40, said: “Doctors said he was so fragile they wouldn’t be able to resuscitate him or intubate him.
“When I talked to him about it, he denied it – he kept saying, ‘I’m really sorry, I’ll try to fight it’ – he’s afraid it will sink in.
“He told me his funeral plans before his 14th birthday and they are now with the funeral director.”
“I haven’t slept because I’m afraid that if I do, I’ll miss a phone call at night.
“I try to stay strong for his little sister, but you can only be so strong.”
The 18-year-old, who lived every day with excruciating pain, was planning his funeral as a child.
Rhys was born with a skin condition, which means his skin is so thin that the slightest exposure can change his life.
In September this year, Reece, against all odds, reached adulthood, but just weeks later he developed sepsis and pneumonia.
He could never cook, ride a bike or brush his teeth without breaking his skin, and something as small as a paper cut could be fatal.
He attended a regular school but required constant supervision in case he was harmed in any way during daily activities.
The brave teenager has open wounds on at least 50 percent of his body at any given time and is constantly prescribed antibiotics.
Tanya explained that because he looks different, he often gets cruel looks and comments on the street.
“People who see him look at him like he’s nothing,” she said. “It makes him feel like a monster.”
The brave teen has open wounds on 50 percent of his body at any given time and is constantly on antibiotics.
Reece’s parents were told when he was a child that he might not live to even reach double digits, and he planned his own funeral at age 13 so that when that day finally came, he would be ready
Reece’s condition means that the slightest touch to the skin can cause painful blisters to form.
Despite his heartbreaking condition, Rhys remained brave through the pain and even made plans for his own funeral.
Before he was 14, he wrote his own funeral plan because he knew he might not last long.
Tanya said: “He sat down and told me what he wanted for his funeral.
“It was very difficult and very emotional, but this is his wish.
“He wants everyone to wear red because he’s a big Liverpool fan, except red Manchester United shirts are banned.
“He wants to go to a big church to gather everyone, and on his last journey he wants to go past the fire station.
“He wants everyone to release butterflies during the service.
“It was all left up to the funeral director – she was brought on board in 2019 when we were making plans and she’s been on board ever since.”
Just weeks after his 18th birthday, on November 4, Reece’s condition began to deteriorate, which was initially attributed to Covid.
But when the tests came back negative, he was taken to the hospital, where a few days later he was diagnosed with sepsis and pneumonia.
Reece’s health took a turn for the worse on November 14 when he stopped breathing as his lungs filled with fluid.
The 18-year-old wants those at his funeral to wear red in honor of his favorite football team, Liverpool FC.
Reece also planned to release butterflies at his funeral and drive past the fire station for the last time.
Reece developed sepsis and pneumonia and was rushed to hospital on November 4th. Doctors said there was nothing more they could do and his treatment was stopped.
Rhys has been prescribed end-of-life care and is taking several different medications to help ease his pain.
He was transferred to an aged care hospice in Chorley and all treatment was stopped on 15 November.
He takes painkillers to keep him comfortable as they prepare for the end as his organs shut down and he may only have days to live.
Tanya said: “I was mentally preparing for this the day he was born, but it’s impossible to truly prepare.
“On November 14, when he came on shift, I fell to the floor when the doctors told me what happened.”
The family is raising funds to cover his funeral costs to give Reece the send-off he wanted.
To make a donation please click Here.