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 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.

WHAT IS EPIDERMOLYSIS BULLOSA?

Epidermolysis bullosa (EB) is a general term used to describe a group of rare, hereditary conditions that cause the skin to become very fragile.

Any trauma or friction causes blisters on the patient's skin.

It affects about one in 50,000 people worldwide.

About 40 percent of patients do not survive the first year and most do not live longer than five years.

The three main types of the disorder include:

  • EB simplex – where blistering occurs in the top layer of skin. This affects 70 percent of patients
  • Dystrophic EB – where blistering occurs in the top layer beneath the skin's surface, affecting 25 percent of patients
  • Junctional EB – where blistering occurs in the lower layer of the inner skin, which is usually the most severe form of the condition

Most cases are evident from birth.

EB occurs due to defective genes, which can be inherited or occur spontaneously.

There is no medicine.

Treatment focuses on relieving pain and treating complications, such as infections or skin cancer.

Source: NHS Choices And the National Organization for Rare Disorders

'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.

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