The silent torment of our butterfly child

The silent torment of our butterfly child
Alana Sochan at her home in KnockrahaPicture: Eddie O'Hare

THE parents of baby Alana Reid Sochan, who suffers from a rare disease that leaves her skin fragile and prone to blistering, are hopeful a cure will be found for their 20-month-old daughter’s condition.

Rachel Reid and Greg Sochan, who live in Knockraha with their eight-year-old daughter Chloe and their little baby Alana, believe a cure will be found over the next few years that will help their daughter lead a pain-free existence with epidermolysis bullosa (EB). Kids with the condition are known as ‘Butterfly Children’ because the skin is said to be as fragile as a butterfly’s wings.

Alana, whose entire body has to be wrapped in bandages at all times, goes through €15,000-€20,000 worth of bandages in a month as well as taking 15 medications a day, including morphine for pain relief.

Rachel explained the process.

“Alana is bandaged three times a week. Greg cuts all the bandages to the correct size the night before so they are ready to be put on. In the morning we give Alana a Milton bath and then put on her bandages.”

Alana’s mom said that as Alana gets older the process can take a great deal longer.

“It can take up to three hours as Alana wants to be up and about, she doesn’t want to be lying down.”

Despite the adversity that Alana faces she appears to be a very content, happy and playful child with a stubborn streak her mother says she inherited from her father.

“Alana is very sociable, she loves attention and when we go to the shops she loves chatting with everyone she meets.

“She is the youngest person with EB to walk. She was walking at 14 months.” Alana also has a personal assistant who helps her to change her bandages three times a week.

“Alana loves Caroline, the first time she met Caroline, she put the hands out to be picked up and that was unheard of at the time as she was not fond of strangers.”

Alana with her parents Greg and Rachel and sister Chloe at home in KnockrahaPicture: Eddie O'Hare
Alana with her parents Greg and Rachel and sister Chloe at home in KnockrahaPicture: Eddie O'Hare

Another recent change to Alana’s life is the newly appointed outreach nurse that travels from Crumlin hospital in Dublin to Knockraha, Co Cork to check on Alana.

“The nurse has made a huge difference to us, we normally have to travel up to Crumlin every four months, but sometimes we can’t manage it for one reason or another.

“Having the nurse travel to us means Alana gets expert eyes on her wounds on a regular basis whereas otherwise, you are relying on photos which are harder to assess.”

Alana needs to be examined by medical staff in order to ensure that none of her wounds have become infected which could lead to very serious medical problems.

“Some sufferers of EB have died from infections, so we do have to be careful. We have to check in with the staff in Crumlin because they are the only ones in Ireland that know about the condition EB. There is no expert in Cork.”

Another common aspect of Alana’s care is checking her body for blisters and popping them with a needle so they don’t get bigger.

“Blisters leave her skin 40% more fragile than before so we try to protect her from them, but she is up and about now and she wants to explore, so we can’t stop them from happening sometimes.”

Rachel said life with Alana is both easier and harder than when she was a baby. “It is easier because she can tell you if she is in pain, but it is harder because she is older and stronger and if she doesn’t feel like taking her medication or having her bandages changed it makes things very difficult.”

Another thing that is upsetting for Rachel, Greg and Alana is now that she is older she is becoming more aware of all the things she can’t do.

“She often wants to follow Chloe or eat what Chloe is eating, but we can’t let her because even hard food can blister her mouth.”

Rachel said it can be tough on Chloe too, when she wants to do something and she is not allowed because of Alana.

“We often ask Chloe to stop doing things, like maybe jumping on the couch, because she is teaching Alana to do something that could be dangerous for her.”

Despite the heartache, Chloe loves her little sister and the pair are very close. “Chloe is very good with Alana, she is very gentle with her.”

At the moment, Rachel is preparing to campaign at the Dáil with Debra Ireland, an Irish charity that supports families who have a loved one with EB.

Pressure

The organisation is heading to the Dáil on October 25 to raise awareness about the condition and to put pressure on the Government to offer more support to EB suffers and their families.

Rachel said she is looking forward to going.

“I’m a nervous wreck but, it should definitely help, it can’t do any harm anyway, the more of us that speak up the better.”

Rachel the stress and turmoil of not knowing what is around the corner is the toughest thing the family have to deal with.

“It is very easy with some conditions to know exactly how much it will cost month to month, but there is no knowing with EB, we never know how much we will need in a month.

“We might have to change Alana twice a day due to her getting wet or dirty and there is nothing we can do about it.”

Rachel said it is hard to explain the costs to the accountant looking at the figures.

“People who are paying for these bandages are looking at a piece of paper and saying how can a little person cost this much?”

Looking at challenges that are ahead, Rachel said there are a number of worries for them as parents.

“If she makes it to the teenage years, there are very aggressive cancers that could occur, as well as osteoporosis. you just don’t know what to expect, we don’t know what is ahead of us.”

For more information on Alana or the fundraisers that are being organised for her, log onto her Facebook page:Alana’s Butterfly Life.

Evening Echo reporter Roisín Burke talks to the mother of a brave young toddler who was born with a rare skin disease that requires her to be wrapped in bandages at all times.

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