Tuesday 24 October 2017

'Maria cannot have a normal childhood... There will be no playing in the playground for her' - Families of children with rare skin condition appeal for funding

One-year-old Maria is living with a painful and rare skin condition epidermolyis bullosa (EB) and has to be bandaged almost from head to toe to protect her from everyday life.
One-year-old Maria is living with a painful and rare skin condition epidermolyis bullosa (EB) and has to be bandaged almost from head to toe to protect her from everyday life.
Mark and Erica Hyland

Ian Begley

Families whose children have died or are living with a painful skin condition known as the ‘butterfly disease’ have spoken out about the effects of the disease.

Blanchardstown mother Gunita Spirge’s one-year-old daughter Maria is living with EB and has to be bandaged almost from head to toe to protect her from everyday life.

"Before Maria was born I had never even heard of EB, to discover what it means was an awful shock," she said.

"When it's severe what EB does to the skin is scary. Children like Maria cannot have a normal childhood. There will be no playing in the playground for her. Even in her own bedroom everything has to be padded.

"This is why we need research to help find a cure and better treatment, it is the only thing that is going to help these children and the adults who have EB.”

Val and Maria Fynes of Ballyboughal, North Dublin lost their 16-year old son Aaron from epidermolyis bullosa (EB).

The condition causes the skin layers and internal body linings to blister and wound at the slightest touch.

Due to the presence of constant wounds, patients with a severe form of EB are susceptible to a very aggressive form of skin cancer, from as early as their teenage years.

Mark and Erica Hyland
Mark and Erica Hyland

"Aaron was in severe pain before he died, 75pc of his skin was missing, he was going blind and he had to use a wheelchair," said dad Val.

"When Aaron was born the doctors had never seen EB before, they knew little or nothing about it or how to treat it.

"We had to take control of his medical treatment eventually finding help at London's Great Ormond Street hospital.

"Research is the only hope we have to help end the suffering associated with EB,” he said.

Erica Hyland (7) and her sister Alison (12) from Swords also both live with EB and have lost their nails due to the disease.

"If Erica has even a slight fall she is guaranteed to cut and bleed and if that happens she can't do anything for days," said dad Mark.

"The girls do their best to get on with life but it can be difficult, they have lost their nails due to EB and they get constant wounds and blisters. They get fed up fielding questions about things like that.

The Hyland family, including mum Ger, are keen to ensure that life is as normal as possible for the girls despite their EB.

Dr Avril Kennan, Head of Research at Debra Ireland, explains why more research is needed.

"EB brings a lot of pain and another major side effect is the awful itching that accompanies the healing process," said Dr Kennan.

"We all know how much you want to scratch a healing wound, so imagine having wounds all over your body that itch horrendously as soon as they start to heal."

"The itch makes sleeping extremely difficult, parents can spend all night comforting their children.

"At night children with severe EB can scratch themselves so badly they wake in the morning to blood soaked sheets."

October 24-29 is National EB Awareness Week and Debra Ireland, the charity that supports EB patients, is trying to raise vital funds to help people with EB through day to day family support and research to find a treatment for one of butterfly skin's most harrowing side effects – extreme itch.

Text BUTTERFLY to 50300 to make a €4 donation. DEBRA Ireland will receive a minimum of €3.25. Service Provider: LIKECHARITY. Helpline: 076 6805278.

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