Limerick fundraisers for rare skin condition give thanks

Rebecca Laffan

Reporter:

Rebecca Laffan

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rebecca.laffan@limerickleader.ie

Limerick fundraisers for rare skin condition give thanks

Mike Histon of Shanagolden, Joe Carrig from Asketon and Eamon O’Kane and Pat Toomey from Shanagolden - Picture: Richard Sheehy

A WEST Limerick charity walking team who raised €25,000 for people living with a rare and incredibly painful skin condition have said a heartfelt thank you to their local supporters.

Shanagolden-based Eamon O’Kane and his three friends, take part in a 75km charity walking challenge every year for Debra Ireland, the national organisation which supports people living with EB (epidermolysis bullosa).

This rare and incredibly painful genetic condition causes the skin, both inside and out, to blister and wound at the slightest touch.

The Limerick team has raised over €150,000 for the charity in the past 14 years by taking on Debra’s Kerry Mountain Challenge.

“Last year was our best yet, we set a target of €25,000 which I didn’t think we’d reach, but incredibly, we managed to surpass it,” said a delighted Eamon.

The team includes Eamon, Pat Toomey and Mike Histon from Shanagolden, with Joe Carrig from Asketon.

The courage of people with EB has inspired the Limerick men to go the extra mile for the charity.

“Debra Ireland’s Patient Ambassador Emma Fogarty is the oldest person living with severe EB in Ireland and she is one of the greatest people I’ve ever met,” said Eamon.

“Emma lives with excruciating pain every day, her body is 80% covered in bandages to protect her from everyday life and yet you never see Emma without a smile on her face.”

According to Joe Carrig: “Once you meet the patients and their families their stories tug at your heart strings.

“It is unbelievable how much these people have to suffer, you would do anything to help them.”  

With this in mind, the team put a huge effort into fundraising.

Donations come from family, friends and neighbours, as well as supermarket bag packs and an Irish music night hosted by Joe, who is a fine singer.

“It is a great community effort and I want to thank everyone who supported us. The money given to Debra makes a real and lasting difference to patients and families living with EB,” said Eamon.

Debra Ireland’s next Kerry Challenge takes place in Dingle on May 22-24 and Eamon is encouraging others to join them.

“It is a very sociable event. People from all walks of life and all levels of fitness take part and everyone goes out of their way to make new people feel welcome.”

“Not only do you get to immerse yourself in some of Ireland's most spectacular scenery and enjoy great sing-songs in the evenings, you will also be making a huge difference to patients and their families with EB,” he said.

Debra Ireland was established in 1988 to provide patient support services and drive research into treatments and cures for those living with the genetic skin condition EB (epidermolysis bullosa).

EB is a very distressing and painful condition which 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.

Debra Ireland is striving to end this heartache and pain by funding early-stage research programmes to find treatments and cures for EB and skin cancer.

Text BUTTERFLY to 50300 to donate €4 to Debra Ireland.Text costs €4. DEBRA Ireland will receive a minimum of €3.60. Service Provider: LIKECHARITY. Helpline: 076 6805278.

For more information on Debra Ireland's Kerry Challenge see www.debraireland.org