Butterfly children: Children suffering from Epidermolysis Bullosa (EB) are often described as the butterfly children because their skin can be as fragile as the wings of a butterfly, tearing at the least pressure.
So it is fitting that Debra Ireland, the EB charity, has created a jewelled butterfly necklace to raise funds for nursing care and research.
Designed exclusively for Debra by Pilgrim Jewellery, the delicate pendant has an adornment of marcasite-style butterflies, set off by crystals and freshwater pearls set on a silver chain. It will retail at €48.50.
EB is a distressing and painful genetic disorder causing skin layers and body linings to separate and blister at the slightest touch. Children with EB can wake with blisters each morning caused by just turning over in bed, tear the skin in their throat when swallowing, and receiving a hug from Mum or Dad can be painful and damaging.
With mild EB, blisters can be localised and heal. In more severe conditions, other parts of the body are affected. Severe EB leads to debilitation, deformity, disability, even death.
All forms are genetic in origin. One in 227 carries the defective EB gene, with one baby in 18,000 born here with EB each year.
"Medical research is the key to finding an effective treatment," says Margaret Webb, chief executive of Debra Ireland, explaining that the organisation is currently funding research at Trinity College, Dublin, University Colleges Cork & Galway and St Bartholomews Hospital, London.
Projects in Cork into wound healing and in Galway into the creation of artificial skin will benefit people beyond the EB community, while the UK research, led by Irishwoman Doctor Edel O'Toole, examines links between EB and skin cancer.
The charity has also developed specialised teams in Our Lady's Hospital for Sick Children, Crumlin, with an adult service at St James Hospital, Dublin 8.
"The Crumlin service makes a huge difference. If you talk to a parent who had a child with EB 15 years ago... just getting a diagnoses was difficult... Today, wherever a baby with EB is born in the country, they are transferred to Crumlin, a biopsy is taken, and the liaison nurse begins working immediately with colleagues, the baby, the parents," says Ms Webb.
Debra Ireland receives limited statutory funding and depends mainly on public donations. "Every butterfly necklace we sell will pay for more than one hour of research," she says.
For further information, contact Debra Ireland, telephone 01-6776855, e-mail:info@debra.org www.debraireland.org