'A paper cut could kill him': Teen with rare, dangerous condition celebrates his 16th birthday

·5-min read
A mum has opened up about her son's rare skin condition. (SWNS)
Rhys Williams has a rare skin condition. (SWNS)

A mum has opened up about her teenage son's everyday reality of living with a rare skin condition, which means he could be killed by something as simple as a papercut.

Rhys Williams, 15, from Bolton, was born with a severe skin condition called epidermolysis bullosa (EB), which means his skin is so thin that the tiniest impact can be life-altering.

As a result, the teenager can’t even sit on a toilet, ride a bike or even brush his own teeth, as the slightest impact could tear his skin or cause it to blister, making him susceptible to a life-threatening infection.

When he was a baby, his parents were warned that their son might not live to celebrate his 10th birthday, but despite the dangers surrounding his condition and his declining health holding him back, Rhys is still fighting. 

Read more: Doctors said she would never walk. This brave toddler proved them wrong

Rhys was born with the rare skin condition, which leaves his skin extremely fragile. (SWNS)
Rhys was born with the rare skin condition, which leaves his skin extremely fragile. (SWNS)

"Every day is scary - there are so many threats to his health that can have terrible consequences," mum Tanya Williams, 38, says.

"Something as simple as a papercut or a tiny scratch from a nail can be fatal to Rhys.

"He is in so much pain all the time and I can see it in his eyes every day - it's hard to watch as a mum.

"But he is such a strong boy and he never gives up - he can't go and ride a bike or play football with his friends but he has a smile for everyone he sees.

"He's been through way too much for his age but he's surpassed all of the doctors expectations and we're so proud of him.

"We just have to take every day as it comes and make as many memories as possible."

The condition leaves his skin fragile. (SWNS)
The condition leaves his skin fragile. (SWNS)

The teenager, who lives with his mum, dad Mark, 54, and sister Teegan, nine, was born with the severe condition, which affects collagen in the skin.

Rhys is currently confined to a wheelchair and sports open wounds on 50% of his body at any given time, which require him to constantly take antibiotics to prevent contamination from germs. 

Nonetheless, his mum, who is his full-time carer, revealed he suffers from infections about “40 weeks of the year” due to his compromised immune system.

"It's horrible to see your child going through this and there is nothing we can do about it," she explains. 

"His health gets worse with age, but he has proven all the doctors wrong by making it this far."

While he will never be able to cook, clean himself, brush his own teeth or sit on the toilet by himself, he goes to a conventional school but needs constant supervision in case he sustains an injury during his day-to-day activities.

Read more: World's most premature baby defies the odds to celebrate first birthday

(SWNS)
At any given time, Rhys has open wounds covering half of his body. (SWNS)

Something as small as a nick with a fingernail, can cause agonising skin tears or enormous blisters which can be fatal if they become infected.

As well as coping with the difficulties his condition presents, his mum says her son also has to deal with cruel looks and comments from strangers in the street.

"People who see him look at him like he's nothing," she said. "It makes him feel like a monster."

Despite his debilitating condition, Rhys has managed to maintain a positive outlook on life.

"He has a smile for everyone, no matter what he is going through," his mum continues. 

"He has never once complained even when we can tell he is in pain."

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When he reached his 10th birthday, the first of many times he surpassed doctors' expectations, the family threw him a big birthday party and have continued to celebrate in style ever since. 

For his 14th birthday, the family launched a campaign to get as many birthday cards delivered to Rhys as possible, to show him people care, and they were blown away after thousands of cards and good wishes were sent to their home

Rhys has defied doctors expectations by celebrating his 16th birthday. (SWNS)
Rhys has defied doctors expectations by celebrating his 16th birthday. (SWNS)

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Unfortunately, Rhys’ condition continues to deteriorate with age, and earlier this year doctors discovered he had a heart condition related to his EB. 

Fearing his upcoming birthday could be Rhys’ last, the family put on the most memorable celebration yet to mark his 16th birthday, which he celebrated on 21 September.  

"It's so hard, but with Rhys, we have to take every day as it comes," his mum says of her son. 

"We do everything we can to treat him like a normal teenager because that's what he wants and deserves.

"I am so proud of him and we will love him no matter what and we will do anything to make him smile.

"They say not all superheroes wear capes and he is our superhero."

Additional reporting SWNS.

Watch: Premature baby born 15 weeks early kept safe and warm in bubble wrap. 

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