'A space that can’t be filled’ - mother’s heartbreaking tribute to sister
Image 1 of 3
Cora Doyle from Kinnegad had the most severe form of recessive dystrophic epidermolysis bullosa (EB). She was one of the longest living people with severe recessive dystrophic EB and died aged 40, in July 2010.Image 2 of 3
Cora Doyle from Kinnegad, with her mother, Kathleen.Image 3 of 3
Patricia Doyle, who was 11 years older than her late sister Cora, said their family will gather to tell stories and remember Cora this Christmas.A local mother says Christmas will be tinged with heartbreak after the devastating loss of her sister to a rare skin condition.
Cora Doyle from Kinnegad had the most severe form of epidermolysis bullosa (EB). She was one of the people living longest with severe recessive dystrophic EB and died in July 2010 aged 40.
Fifteen years on, her sister Patricia Doyle, who has a son Dane Smith (39) and three grandchildren Gabriella (19), Greg (15) and Ethan (8), said her family will remember her spirit this Christmas.
“When we sit together this Christmas, we’ll tell stories and remember Cora,” she said.
“Her courage, humour and light – the joy she brought into our lives, but we’ll also feel the ache of her absence, a space at the table that can never be filled.”
Born in 1970, when less information was available about EB, Cora spent the first two years of her life in an intensive care unit.
“My parents were by her bedside every day, their hearts torn between our home and the hospital and they carried their worry with them every day – so did we,” said Patricia, who was 11 years older than her sister.
“This was in the 1970s and there was no information at all about EB. If only Debra (the national charity that supports the 300 people in Ireland with EB) had existed back then.”
The rare and incurable skin disease, also known as ‘Butterfly Skin’, causes skin to break out in painful blisters at the slightest touch.
The severity of Cora’s condition meant that she had to undergo frequent, excruciating bandage changes at a time when soft disposable dressings weren’t available.
“We just had bandages that tore Cora’s delicate skin when they were removed. Our mam was so strong but I know it broke her heart to see Cora suffer like that.
“Perhaps the hardest part for my parents was that when your child is born with EB, you can’t simply be a mammy or daddy – you have to be a nurse too. Life revolves around bandage changes – slow, painful, meticulous.
“Every day, birthdays, Christmas Day, it didn’t matter, mam had to spend hours changing bandages. When Cora was still with us and Debra had been founded, their support was invaluable. The Debra team saw past EB and saw Cora, my amazing sister.”
Debra still heavily relies on public support to provide a range of services, such as counselling sessions for adults with EB, play therapy for children, home visits, specialised EB training for nurses and medical staff and research.
“Grief touches all of us in different ways,” said Deirdre Callis, Debra’s head of Family Support.
“For some, it’s the loss of a loved one; for others, it’s the grief that comes with an EB diagnosis and the need to adapt dreams, plans and daily life. Our team is here to listen, visit or just to be a voice on the other end of the phone.
“And because of people’s support, we are always able to fund counselling sessions for adults with EB, play therapy for children and be here for every person and every family who needs us.”
Donate today at debra.ie.