A local mother whose children suffer from a rare skin disorder put her troubles behind her to take part in the Lisburn fun run and raise £450.
Sharon Benson’s four children Jordan (12), Sarah (10), Rebecca (7) and Charlotte (4) suffer from EB a genetic skin disorder that causes agonising blisters to their hands and feet.
Sharon, from Dromara Park, Old Warren, says her children have what is known as ‘butterfly skin’ a rare genetic disorder. They are the only known cases in Northern Ireland, bar one, registered with a support charity based in Dublin.
Debra Ireland charity offers Sharon and her family support and advice. It was established 25 years ago by a group of parents.
Children born with the genetic condition have skin as fragile and delicate as the wings of a butterfly and the slightest movement or touch can cause blistering which results in massive wounds or blisters appearing all over their body.
Sharon, whose husband Norman also suffers from the condition, says that daily life for them can often be trying.
Painful bandage changes to her four children’s feet has become just a way of life for Sharon.
“My son was doing tests before the summer and because his feet were sore he had to use crutches but that caused blisters to his hands,” she said.
“That meant that he had to get someone to write down the answers for him because he could not use his pen.
“The girls would complain that they cannot just wear just any type of shoes. They cannot wear boots or flip flops. They have to have plenty of bandage padding on their feet and wear specific shoes. It is known for their toe nails to come off.
“We as a family cannot do simple things that others just take for granted. We cannot go for a walk in the park for instance. The children cannot do simple things. They cannot go the bed with an electric blanket or water bottle. When Rebecca was born she had no skin on her neck.”
Her children who are on daily medication, pain killers and doses Vitamin D are also closely monitored at the Royal, as the condition can often lead to complications in later life.
Debra Ireland have been a great support to the family. Representatives from the charity will call her regularly from Dublin.
“Debra have been great to us. We would be lost without them,” said Sharon. “A few of my husbands relatives in Lisburn suffer from the condition but are not registered with the charity. There is only one other case in Londonderry.”