Leinster game starts butterfly effect for kids

WHEN Jayden Moore-Connors ran out onto the pitch at the RDS last Saturday with the Leinster Rugby captain for the Champions Cup clash against Montpellier he was not only honouring his brave sister Casey but he was also doing it for all those living with an extremely difficult condition.

As an avid Leinster fan, it was a big day for Jayden but it was also an opportunity to highlight the issue of all those living with EB, as well as a chance to dedicate the event to the memory of a little boy called Liam Hagan.

Debra Ireland is the only charity in Ireland that provides hope and support to patients living with EB (epidermolysis bullosa) and their families.

As one of Leinster Rugby’s two charity partners, they were offered the mascot slot for Saturday afternoon’s game against Montpellier.

Jayden was declared that mascot and he took part in honour of his sister, Casey Moore-Connors, from Clondalkin, who is only five years old. 

She was born with EB, a rare genetic skin condition that makes her skin extremely delicate.

Her skin is as fragile as a butterfly’s wing and can be just as easily damaged.

On a daily basis, her body is at war with itself and she is blistered and wounded from head to toe.

She is wrapped in bandages that have to be changed every second day in an excruciating routine that can take up to four hours.

What is even more heart-breaking, is that underneath her bandages the same wounds are occurring internally too.

This time last year, Liam Hagan lost his courageous battle with EB.

Sadly he passed away just three weeks before he was due to be a Leinster mascot himself leading Leinster out against Connacht.

Standing on the field cheering Jayden and Leinster on Saturday was mum Rachel, dad Alan, his granny and grandad and, of course, Casey.

“Little Liam’s anniversary was last week, and we all travelled to Monaghan to show our solidarity with the Hagan family,” said Casey’s mum Rachel.

“The EB community is a very tight-knit one, and like Leinster, we all stick together in adversity.

“I am delighted that Jayden had 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.”

This year the charity is asking people to join in the butterfly effect.

This has already started with the Leinster fans at Saturday’s game andis  stretching right across the province and indeed the country in particular for Debra Ireland’s National EB Awareness Week, which is taking place from October 23-29.

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.