Clondalkin boy will honour his sister as Leinster mascot this weekend
By Aura McMenamin
A Clondalkin boy will act as the mascot for Saturday’s Champions Cup match between Leinster and Montpellier in honour of his sister who suffers from a rare skin condition.
Five-year-old Casey Moore-Connors was born with EB, or ‘butterfly skin’, a rare genetic skin disease that makes the skin extremely delicate.
The painful condition means that Casey has to be wrapped in bandages to prevent damage to her skin, which is blistered and wounded. Her bandages have to be changed every second day, a routine that takes up to four hours and causes her excruciating pain.
Debra Ireland is the only charity providing support for EB patients and their families.
To show support for Casey and Debra Ireland, brother Jayden will run onto the pitch with Leinster Rugby's Isa Nacewa and act as the game’s mascot.
Jayden will also be honouring all those living with EB including Liam Hagan, another little boy who lost his battle with the skin disease last year.
Mum Rachel will be standing at the field to cheer on Jayden, along with Casey and their grandparents.
She said: “Little Liam’s anniversary was last week, and we all travelled to Monaghan to show our solidarity with the Hagan family.”
“The EB community is a very tight-knit one, and like Leinster, we all stick together in adversity. I am delighted that Jayden has the chance to highlight this awful disease on such a national stage – he is very close to his sister and sees what she has to go through on a daily basis.”
Judith Gilsenan of Debra Ireland said: “We are so grateful for the incredible support we have received from Leinster Rugby and the Blue Army over the last year.”
Debra Ireland’s National EB Awareness Week will take place from the 23rd to the 29th of October.
Anyone wishing to support Debra Ireland during their #EBAwarenessWeek is asked to text BUTTERFLY to 50300 to donate €4 and Debra Ireland will receive a minimum of €3.25 from every donation.
