Eight hundred runners will take part in the DEBRA Ireland Wicklow Mountains Half Marathon and 10km on Sunday 8th March to raise vital funds for children and families living with the devastating skin condition EB (epidermolysis bullosa).  

EB butterfly tattoo
EB butterfly tattoo

Participants may end up with blisters that will last a day or two, but these blisters will eventually heal.  For children living with EB, constant blisters are just a normal part of their everyday lives.

Casey Connors (3) was born with a severe form of EB which means her skin is missing the collagen that binds it together.  Her skin is so fragile that it blisters at the slightest touch and is as delicate as a butterfly’s wings.  Currently there is no cure for EB and the only treatment is painful bursting of blisters and constant bandaging to prevent infection.  Like other children her age, Casey loves Peppa Pig. A few weeks ago Peppa became Casey’s mountain.  A simple fall from tripping over a Peppa toy caused such severe blistering on Casey’s knees and feet that she could not walk for a week.

Every day I have to watch Casey scream in pain from wounds she has created simply by learning to walk. The look of fear in her eyes when she sees me preparing for her bandage change breaks my heart. She is too young to understand that the pain I have to inflict on her is keeping her alive; making sure that a new wound doesn’t turn into an infection which would mean another visit to the hospital. I should be able to fix this, kiss it better. But I can’t fix it. I never will.” Rachel Connors (Mum of Casey).

Last year former Olympian boxer and Councillor Kenneth Egan ran the 21km (in an impressive time of 2:06).

Kenneth Egan Half Marathon
Kenneth Egan Wicklow Mountains Half Marathon

“I was lucky enough to meet Emma Fogarty at the Rehab awards a few years ago and decided to run the Half Marathon for DEBRA Ireland. I must admit it was one of the hardest challenges I have undertaken. It was a tough route and at times felt like physical and mental torture, but I loved it!” 

The event attracts both professional and non-professional runners and this year’s race will be the biggest one yet with the half marathon selling out in record time.  DEBRA Ireland has asked all participants to wear an EB butterfly tattoo on the day in support of patients like Casey and Emma.

By taking part in the Wicklow Mountains Challenge, participants are helping to fund a patient service called the EB Community Care Programme which provides a DEBRA funded EB nurse, working from Crumlin Children’s Hospital, who will visit patients at home providing care and advice where it is needed most.  A lifeline for patients and families.

The half marathon entry is now closed but there are still places available on the 10km.

(Pics courtesy: Ed Rice)