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’

• Rhys Williams, from Bolton, has suffered with the skin condition since birth 
• READ MORE: I’m terminally ill at 17 and have already planned my own funeral – but I’m still determined to live life to the full

A teen with a skin condition so severe a papercut could be fatal has days left 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 the ‘butterfly skin’ disease – which means his skin is so thin that the tiniest impact could be life-altering. 

The teen has lived every day with agonising sores all over his body.

Rhys’ parents were told when he was a baby that he might not even make it to double figures – and he planned his own funeral aged 13 so that when the day finally came, he’d be ready.

He reached adulthood this September against the odds 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 severe skin condition called epidermolysis bullosa, and has only days left to live after being diagnosed with sepsis 

Doctors said there was nothing more they could do and his treatment was stopped.

He was put on end of life care and has been moved to a hospice where he is on a number of pain medication to keep him comfortable.

Doctors warned the heartbroken family he has ‘days or weeks’ left 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 won’t be able to resuscitate or intubate him.

‘When I spoke to him about it he was in denial – he kept saying ‘I’m so sorry, I’ll try to fight it’ – he is scared for it to sink in.

‘He told me his funeral plan before his 14th birthday and they’re with the funeral director now.

‘I’ve not slept because I’m scared if I do that I’ll miss a phone call in the night.

‘I’m trying to stay strong for his younger sister but there’s only so strong you can be.’

The 18-year-old, who has lived every day with agonising sores, made plans for his funeral as a child 

Rhys was born with the skin condition, which means his skin is so thin that the tiniest impact could be life-altering

Rhys reached adulthood this September against the odds but just weeks later, he developed sepsis and pneumonia

He could never cook, ride a bike, or brush his own teeth without the risk of damaging his skin – and something as small as a papercut had the potential to be fatal.

He went to a typical school but needed constant supervision in case he came into any harm during his day-to-day activities.

The brave teen has open wounds on at least 50 per cent of his body at any given time, and is constantly being prescribed antibiotics.

Tanya explained because he looks different, he would often receive cruel looks and comments in 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 per cent of his body at any given time, and is constantly taking antibiotics 

Rhys’ parents were told when he was a baby that he might not even make it to double figures – and he planned his own funeral aged 13 so that when the day finally came, he’d be ready

Rhys’ condition means that the smallest impact on the skin can cause it to develop painful blisters

Despite the heartbreaking condition, Rhys has remained brave throughout the pain – and has even planned arrangements for his own funeral  

Before he turned 14, he wrote his own funeral plan because he knew he might not make it much longer.

Tanya said: ‘He sat and told me what he wanted for his funeral.

‘It was very hard and very emotional, but they are his wishes.

‘He wants everyone to wear red because he’s a massive Liverpool FC fan, except red Manchester United shirts aren’t allowed.

‘He wants to go to a big church to get everybody in and he wants to go past the fire station on his final journey too.

WHAT IS EPIDERMOLYSIS BULLOSA?

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

Any trauma or friction causes patients’ skin to blister.

It affects around one in every 50,000 people worldwide. 

Around 40 per cent of sufferers do not survive the first year and most do not live beyond five years old. 

The three main types of the disorder include:

• EB simplex – where blistering occurs in the upper layer of skin. This affects 70 per cent of sufferers
• Dystrophic EB – where blistering occurs in the upper layer beneath the skin’s surface, which affects 25 per cent 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 obvious from birth.

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

There is no cure.

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’s all been left with the funeral director – she was brought 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 put down to Covid.

But when the tests came back negative, he went to hospital and was diagnosed with sepsis, and pneumonia a few days later.

Rhys’ health nosedived on November 14 when he stopped breathing because his lungs filled with fluid.

The 18-year-old wants attendees at his funeral to wear red to mark his favourite football team – Liverpool FC 

Rhys also planned for butterflies to be released at his funeral – and to be driven past the fire station one final time 

Rhys developed sepsis and pneumonia and was rushed to hospital on November 4. Doctors said there was nothing more they could do and his treatment was stopped

Rhys’ has been put on end of life care and is on several different medications to help ease the pain  

He was moved to a hospice on end-of-life care in Chorley and on November 15, all treatment was stopped.

He’s on painkillers to keep him comfortable as they prepare for the end – as his organs are shutting down and he may have just days to live.

Tanya said: ‘I’ve been mentally preparing myself for this the day he was born but you can never truly be prepared.

‘When he took a turn on November 14, I hit the floor when doctors told me what happened.’

The family are fundraising to cover the costs of his funeral to give Rhys the send-off he wanted.

To donate, please click here.

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