Cork girl with rare skin condition to feature on RTÉ show

The family of a little girl with an agonising genetic skin condition hope to rest a little easier after experts built an alert system for her.

Thanks to the team on RTÉ's Big Life Fix, Alana Reid Sochan's parents will know if she injures herself in her sleep. It is hoped the system will help the entire family get a better night's sleep.

Alana, age four, from Knockraha in Cork has the butterfly skin condition epidermolysis bullosa (EB), which causes skin to blister at the slightest touch.

Her mum, Rachel, said Alana often scratches and injures herself when she is in bed.

“She can do damage to herself when she’s asleep and we get up as often as 15 times a night when we hear her scratching. We are still getting very little sleep," she said.

The Big Life Fix challenges a group of designers, engineers, computer programmers and technology experts to create inventions that will transform people’s lives.

They use cutting edge science and technology to build practical solutions for the people who've been featured in the shows in recent weeks.

Filming for this week's show started in September 2018 and finished just before Christmas.

On Wednesday, we saw the team set up microphones and cameras in Alana’s room so that her parents could see and hear her, but crucially, allowed them to get some sleep.

Rachel said: “The system is installed now and although we have not used it as much as we would have liked to, we know that it absolutely works.

The device was created to give Alana more independence. It means that we can hear her scratching as if she was in our own room.

“The guys put a lot of thought and work into it and Alana has made some friends for life in the crew.”

There is no known cure for EB and the only treatment is constant painful bandaging of the skin.

“It is still something that we are coming to terms with. Every single day can be different – it can change in a split second if she hurts herself, and we have to take her upstairs immediately to change her dressings," Rachel said.

"She gets a full change of bandages four days a week, which takes three of us three hours to do.

“But if she has just banged her leg off something, it might only take an hour and a half to change the bandages in the affected area.

“She is very active and loves dancing so we try to teach her ways to do this safely. We try to stop her bouncing and to keep her feet flat on the floor.

Bouncing on the side of her foot, not distributing the weight evenly or falling is enough to cause blisters or a tear in her skin.

“A simple thing like not getting her on the toilet seat properly or sliding off the couch can also mean blisters or tears."

Debra Ireland provides patient support services for people with EB and drives research into treatments and cures.

The charity supports 300 people living with the condition and is striving to end the heartache and pain by funding early-stage research programmes to find treatments and cures for EB and skin cancer.

Like other charities, its fundraising has been hit by the Covid-19 pandemic.

You can text Text Butterfly to 50300 to donate €4 to Debra Ireland.

You can watch the programme on the RTÉ Player and next week's Big Life Fix airs on RTÉ One on March 25, at 9.35pm