Mother’s marathon bid to raise funds skin condition charity

She had repeatedly visited doctors to find out what was causing her baby son’s dry skin, incredible restlessness and poor sleep.

Little Bryce was being treated for eczema, but Lillian had suffered eczema herself and knew it wasn’t the same.

Already mother to two older boys, Kyle, now 19, and Tyler, 15, Lillian was adamant that something serious was wrong with Bryce. Now, as the doctor looked at the blisters on his feet and asked if she had sat him next to the radiator, she decided to give him a piece of her mind.

“That was the day when I thought I’d had enough. I was so angry, and I’d hardly had any sleep because Bryce slept so badly. I asked if I could be referred to dermatology,” she recalls.

But even that referral wasn’t the end of her fight to get the right diagnosis for Bryce, now six.

She says: “The nursing sister kept giving us things for eczema, then they suggested it was scabies and I thought, ‘That’s not scabies, I’ve seen scabies’, but we did the treatment for it, and the poor wee soul’s skin must have been burning. She said that we had to treat the whole family for scabies, and that’s when I said no.” But the same nurse finally suggested what turned out to be the correct diagnosis – Epidermolysis Bullosa, or EB.

As soon as she put the idea to the doctor, the consulting room filled with people – other doctors, nurses and medical students all flooded in to see the six-month-old who was facing this rare diagnosis.

Around 5000 people in the UK are estimated to suffer from EB, a genetic condition that means the layers of the skin are not correctly bonded together. As a result, the slightest knock or rub causes skin and internal body linings to “shear” and blister, causing painful open wounds.

Because their skin is so delicate, youngsters with the condition are sometimes referred to as “butterfly children”.

In its mildest form, EB affects only the hands and feet – though this still makes walking and holding things very painful. In the most severe cases, sufferers live short, painful lives, and are liable to develop skin cancer.

Bryce has dominant dystrophic EB, which lies in the middle of the range. It affects the skin all over his body, and can affect his internal tissues, but it is hoped that with good care he will be able to live a relatively normal life.

When he was first diagnosed, doctors didn’t know which variety they were dealing with – they could only tell his mother that he had EB.

Lillian then went home to break the news to her partner, Bryce’s dad Stuart, an engineer.

She recalls: “My first question to the doctors was ‘How long does that last?’ because I thought he would grow out of it. They basically just told us ‘It’s a skin condition, we’re not sure yet what severity, but don’t look it up on the internet.’

“I drove home, crying all the way. I phoned my sister and cried to her and Stuart came home and was on the internet and, of course, we thought, ‘That’s it, he’s going to die.’”

Peace of mind eventually came in the form of Pippa McCartney, a nurse from the EB charity Dystrophic Epidermolysis Bullosa Research Association (DebRA), who visited the family at home in Corstorphine.

“She just made it feel normal by the time she left. She made me feel much more relaxed about it and said they would guide me how to dress him and what was best for him.”

Pippa is still the family’s greatest ally, attending doctors’ appointments with them and offering practical help and advice.

She provided a sheepskin rug for Bryce to sit on and helped with ideas to keep him from scratching or injuring himself – long socks on his arms, padding to stop him scratching his head on the cot bars, and so on.

At first he would be covered in dressings from head to foot at bedtime to stop his skin sticking to his pyjamas, but then DebRA gave him a set of DermaSilk undergarments, which are soft enough to minimise the damage. They have to be soaked after every wear, though, so Lillian went to ask the doctor for a second set – but was refused.

“They said ‘Do you know how much this is?’” she recalls. “I spoke to Pippa and she wrote a letter saying ‘This is something that the child needs. Please do NOT challenge the mother on this.’”

The DermaSilks were promptly supplied by the NHS and now Bryce has at least a fighting chance of getting up in the morning without having to tear his pyjamas off his skin – which would often take the skin with it.

The youngster has proved skilled at adapting to his condition. His knees are particularly susceptible to blisters and, as a tot, he would shuffle on his bottom to get around, rather than crawl. A typical young boy, who is into everything – particularly playing with mud, sand and water – he is also skilled at flipping himself over when he falls to make sure he lands on his hips rather than his fragile hands.

When he started at Fox Covert RC Primary School, he was a little self-conscious about his dressings, but he now rolls his eyes with boredom when sympathetic adults spot the bandages and ask what he’s done to himself.

His open wounds mean he is also prone to infections, which can make things tough – he has just finished his fourth set of antibiotics since Christmas, and can wake up delirious and screaming when he is fighting off a bug.

The condition requires constant vigilance to treat the sore patches and blisters, Lillian says: “He’s got a helper in school, who puts bandages on his hands, and you have to pop blisters when they form, because they’re not self-limiting, if you don’t pop them they’ll just grow and grow.

“Even if his hands have been fine going into school, by the time he’s done a wee bit of work she’ll then dress areas that have blistered.”

The dressings might protect him from bugs and further shearing, but they also stick to him. The only way to remove them is for Bryce to get into the bath, dressings and all, and hope they come off without pulling away too much skin.

It is a painful routine, kept in check by constant checking and cupboards full of creams, oils, dressings and powders. But perhaps Bryce’s greatest weapon as he grows up will be his sunny outlook – and the resilient attitude he has learned from his mother.

“He’s a really happy wee boy throughout the day. He’s happy-go-lucky and sometimes people say you’d never know there was anything wrong,” she says.

“I think it’s been better because I had two older boys. If he’d been my first I’d never have had any more, and he would have been wrapped in cotton wool.

“But I said I’m not going to treat him any differently. If he wants to do it, he can do it and if he doesn’t like it he’ll learn not to do it in future. As he says, ‘I’ve always had it’, so he doesn’t know any different.”

[email protected]