Katie Ryle should be a 19-year-old looking forward to Christmas with family and friends, but her life was tragically cut short after just eight weeks by epidermolysis bullosa (EB), the extremely painful genetic condition caused by missing proteins which bind skin layers together.
Shortly after her birth, a midwife noticed skin was missing from five of Katie’s fingers and her parents Miriam and John watched helplessly as she was rushed to the Rotunda Hospital’s intensive care unit.
“We couldn't hold her or feed her,” said Miriam, from Dublin 12.
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“I got to hold her skin-to-skin for about two minutes, and then she was taken away. After a few days, Katie was transferred to the Nazareth ward in Our Lady’s Children’s Hospital, Crumlin.”
Her blisters worsened, covering her from her shoulders to her toes and inside her mouth, causing constant pain.
A biopsy confirmed that she had Junctional EB, a severe and fatal form of the incurable condition.
The couple decided to have their little girl christened and Miriam and her sister-in-law bought her a pink and white striped dress, white cardigan and matching pink socks.
To comfort her in her final days, Miriam sang the folk song, My Bonnie Lies Over the Ocean.
On August 14, 2004, she returned home briefly but got a call moments later from the hospital, confirming her worst fears.
“The nurse placed her in my arms and I held her close, I didn’t have to worry about hurting her anymore.
“She passed away in my arms a few minutes later. John and I spent the next few hours with her, cherishing the last time we would see or touch our sweet baby girl.”
Miriam, speaking publicly for the first time since the family's loss, is asking people to donate this Christmas to debra.ie/donate, the charity which supports and advocates for those with EB and their families.
The organisation was in its infancy when Katie died – but the family soon became part of the EB community.
“The support has been brilliant,” Miriam said.
“I’ve met other families who share the hardships of EB and these are the only people that truly understand what I've gone through. They heal wounded hearts.”
Deirdre Callis, Head of Debra’s Family Support Team, said the public can honour Katie’s memory with a gift that will provide comfort, support and assistance to families facing the heart-breaking challenges of EB.
“I’m devastated every time I hear a story like this. Because of your generosity, I and other members of the team can be available to a family at a moment’s notice when a baby is born with EB,” she said.
A gesture by a generous donor means any amount donated will be doubled, up to €50,000.
Donations can be made at debra.ie/donate
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