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Alana’s parents sleep a bit easier

Wednesday, 1st April, 2020 5:19pm

A Knockraha family can rest easier as experts have found a way to alert the parents when their daughter needs their attention.

Four year old Alana Reid Sochan suffers from the butterfly skin condition epidermolysis bullosa (EB) which causes the skin, both inside and out, to blister and wound at the slightest touch.

According to her mum Rachel, Alana often scratches and injures herself when she is in bed.

“It’s a big thing for us because she is still sleeping in our bedroom,” she said.

“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.”

Rachel added: “We are still getting very little sleep. We have a bedroom set up for her but we have not moved her out into it yet.”

However, an RTÉ programme called ‘The Big Life Fix’ has helped them. The show challenges a group of designers, engineers, computer programmers and technology experts to create inventions that will transform people’s lives.

The programme, which recently aired, followed the group of designers and engineers as they set up a series of 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 explained: “Filming started in September 2018 and continued for over a year until just before last Christmas. 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.”

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

Alana’s condition has had a huge effect on Rachel, her other 11 year old daughter Chloe and Rachel’s fiancé Greg Sochan.

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

“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,” said Rachel.

Rachel concluded: “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. She might say ‘well, my big sister is jumping off a couch, so why can’t I?’ We have lots of interesting conversations in this house! The filming was done around us. The crew came to the house whenever we were comfortable and Alana loved them.”

Debra Ireland was established in 1988 to provide patient support services and drive research into treatments and cures for those living with the genetic skin condition.

As a result of restrictions imposed by the Covid-19 pandemic Debra Ireland’s ability to fundraise has been compromised.

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