Heartbreaking vow from boy, 18, with rare ‘butterfly skin disease’ as he is given days to live – after planning his own funeral at 13 – as he tells his mother: ‘I’m so sorry. I’ll try to fight it’
A teenager with a skin condition so severe a papercut could be fatal has days to live after developing sepsis – and has planned his own funeral.
Rhys Williams, 18, from Bolton, was born with a serious skin condition called epidermolysis bullosa (EB) – known as ‘butterfly skin disease’ – meaning his skin is so thin that the slightest impact can be life-changing.
The teenager suffers from painful sores all over his body every day.
Rhys’ parents were told as a baby that he might not even reach double figures – and he planned his own funeral at the age of 13 so that he would be ready when the day finally came.
Against all odds, he reached adulthood in September, but just weeks later he developed sepsis and pneumonia and was rushed to hospital on November 4.
Rhys Williams (pictured), 18, from Bolton, was born with a serious skin condition called epidermolysis bullosa and has been given just days to live after being diagnosed with sepsis
The doctors said there was nothing more they could do and his treatment was stopped.
He received end-of-life care and has been transferred to a hospice where he is receiving a number of pain medications to keep him comfortable.
Doctors warned the heartbroken family he has ‘days or weeks’ to live and may not make it to Christmas.
His mother and full-time carer, Tanya Moores, 40, said: ‘Doctors said he is so fragile they cannot resuscitate or intubate him.
‘When I talked to him about it he denied it – he kept saying, ‘I’m so sorry, I’ll try to fight it’ – he’s afraid it’s getting to him.
“He told me his funeral plan before his fourteenth birthday and they are at the funeral home now.
‘I haven’t been sleeping because I’m afraid if I do, I’ll miss a phone call during the night.
“I’m trying to stay strong for his younger sister, but you can only be that strong.”
The 18-year-old, who lives with painful sores every day, made plans for his funeral as a child
Rhys was born with the skin condition, meaning his skin is so thin that the slightest impact can be life-changing
Rhys came of age against all odds in September, but just weeks later he developed blood poisoning and pneumonia
He could never cook, ride a bike or brush his own teeth without risking damaging his skin – and something as small as a papercut had the potential to be fatal.
He attended a regular school but required constant supervision in case he was harmed during his daily activities.
The brave teenager has open wounds on at least 50 percent of his body at any time and is constantly prescribed antibiotics.
Tanya explained that because he looks different, he often received 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 teenager has open wounds on 50 percent of his body at any time and is constantly taking antibiotics
Rhys’ parents were told as a baby that he might not even reach double figures – and he planned his own funeral at the age of 13 so that he would be ready when the day finally came.
Rhys’ condition means that the slightest impact on the skin can cause painful blisters to form
Despite the heartbreaking condition, Rhys has remained brave through the pain and even made arrangements for his own funeral
Before he turned 14, he wrote his own funeral plan because he knew he might not survive much longer.
Tanya said: “He sat me down and told me what he wanted for his funeral.
‘It was very difficult and very emotional, but these are his wishes.
‘He wants everyone to wear red because he’s a big Liverpool FC fan, except Manchester United red shirts aren’t allowed.
‘He wants to go to a big church to get everyone in and on his last trip he also wants to visit the fire station.
‘He wants everyone to release butterflies at the service.
‘That all remained with the funeral director. She came on board in 2019 when we made the plans and has been ready ever since.’
Just weeks after his 18th birthday, Rhys began to deteriorate on November 4, which was originally blamed on Covid.
But when the tests came back negative, he went to the hospital and a few days later was diagnosed with sepsis and pneumonia.
Rhys’ health declined on November 14 when he stopped breathing as his lungs filled with fluid.
The 18-year-old wants those attending his funeral to wear red to mark his favorite football team: Liverpool FC
Rhys also planned to release butterflies at his funeral – and drive past the fire station one last time
Rhys developed sepsis and pneumonia and was rushed to hospital on November 4. The doctors said there was nothing more they could do and his treatment was stopped.
Rhys’ has been placed in end-of-life care and is taking various medications to ease the pain
He was transferred to a hospice for end of life care in Chorley and all treatment was stopped on November 15.
He’s on painkillers to keep him comfortable while they prepare for the end – because his organs are shutting down and he may only have a few days to live.
Tanya said: ‘I mentally prepared myself for this the day he was born, but you can never really be prepared.
‘When it was his turn on November 14, I fell to the floor as the doctors told me what had happened.’
The family are raising money to cover the costs of his funeral so that Rhys gets the send-off he wanted.
To donate, please click here.