Miriam Quinlan has shared with us her story. Her baby daughter died of the most severe form of EB. She is now urging people to support the charity helping about 300 other people in Ireland cope with it.
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.
Shortly after her birth in June 2004, a midwife noticed there was skin missing from five of Katie’s fingers – her parents Miriam and John watched helplessly as their newborn was whisked away to the Rotunda Hospital’s intensive care unit.
“We couldn’t hold her or feed her, said Miriam, from Dublin. I got to holder skin-to-skin for about two minutes, and then she was taken away. After just a few days, Katie was transferred to the Nazareth ward in Our Lady’s Children’s Hospital, Crumlin.”
Katie’s blisters worsened, covering her from her shoulders to her toes and inside her mouth, causing her constant pain.
A biopsy confirmed that she had Junctional EB, a severe and fatal form of the incurable condition.
Doctors told the couple that Katie wouldn’t live past infancy. She was loved and cared for throughout her life.
The couple decided to have their little girl christened and Miriam and her sister-in-law bought her a pink and white striped dress, a little white cardigan and matching pink socks. Katie had to wear her vest inside out, to avoid the seams blistering her fragile skin.
In her final days, Miriam sang the folk song My Bonnie Lies Over the Ocean to her daughter to comfort her. “It was her favourite song”.
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 just 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 is now asking people to give what they can this Christmas at debra.ie/donate to support Debra.
“The support has been just 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’re like a second family. Debra brings people together, and in doing so, 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.