Virginia Collectibles & Antique Show raises €3K for 'butterfly skin' charity

Róisín McManus

A family who helped raise €3,000 for a charity helping people with a rare skin condition is confident the money will be put to good use.

The fundraiser was organised by the late John Keenan from Castleblayney, former Fine Gael Councillor and President of the Irish Vintage Engine and Tractor Association (IVETA), and self-proclaimed antiques hoarder John Clancy, whose nine-year-old daughter Kathleena has epidermolysis bullosa (EB) or ‘butterfly skin’.

The Indoor Heritage Collectibles and Antique Show, a display of rare antique collectibles, took place in the Virginia Show Centre in April, and raised €3,000 for Debra Ireland, the national charity for people with EB.

A “totally new” idea that attracted people from across Ireland, the event was a “wonderful success”.

“She’s an unbelievable girl,” John says fondly of his daughter Kathleena.

“She never gives in. I suppose she’s never known anything else.”

Kathleena was adopted from China before her second birthday. In China, she was originally given a diagnosis of EB simplex, which typically occurs in blisters on your feet making it difficult to walk.

However, in Ireland, Kathleena was taken to the dermatology unit in Crumlin and her diagnosis was confirmed as dominant dystrophic, a “less severe” form of the condition, says Tina Tully, Kathleena’s mother.

Speaking to the Celt, Tina says that parts of Kathleena’s body, like her joints, are "particularly prone” to sores and blisters.

“One of her legs has always been more sensitive and much more prone to sores and blisters and would be, most of the time, in bandages of some sort depending on how bad it is at a particular time,” says Tina.

When Kathleena was little, she would frequently have sores on her face, but now the condition is more visible on her hands and nails.

Yet, Kathleena, who is “very active” and enjoys playing football and doing gymnastics “doesn’t let it stop her”.

“She’s fortunate in being able to participate in different activities,” says Tina, who adds that her daughter usually has to deal with more sores and blisters being outside in the summer time.

“I guess a part of it is that her pain threshold is probably a lot higher because of her skin condition and experience,” she acknowledges.

Kathleena is now at a stage where she sometimes looks after her own dressings and blisters.

“She’s given a choice between her reading the book and me doing the bandages or vice versa,” says Tina.

Despite being "used to it", Kathleena can sometimes get frustrated with people, particularly children she doesn’t know, asking questions about her condition. In the past, she has encountered some “hurtful” reactions.

“The children in school that have grown up with her don’t [ask questions] at this stage but at places where she encounters other children that she hasn’t met before, they’ll usually ask questions,” Tina says.

“It’s just children being children and she understands that,” her mum continues, adding that children are generally not unkind to her daughter.

As Kathleena approaches her teenage years and moving to a “different” environment in secondary school, Tina is hopeful people will continue to be understanding of her daughter's condition.

For the past number of months, Tina has been a board member with Debra.

Over the years, the family have received significant support from the charity, and Tina believes it is “nice” to now be able to give back.

“Debra has been brilliant,” she praises.

“They’re there for you as much or as little as you need them, especially in the earlier years when we didn’t know what we were doing and it was all very new to us, Kathleena was much younger and it was a lot more difficult.”

The charity were in regular contact with the family, supporting Tina and Kathleena to go for therapies or treatments when needed.

Debra organises adult peer support groups, carries out and funds research on EB, and there is also an EB Expert Panel that meets two or three times a year to advise the charity.

Debra also runs social events, which are “great opportunities” for families to come together and compare notes.

Through Debra, Kathleena has made a friend of a similar age.

“It’s nice for her to know she’s not the only one,” Tina says.

There are around 300 people with the condition in Ireland.

To support Debra’s work, visit debra.ie/give