'I wish I didn’t need to have my bandages changed on Christmas Day,' Cork schoolgirl with painful skin condition says

A Cork schoolgirl who has a painful skin condition has said that her festive wish is to avoid having her bandages changed on Christmas Day.

Bonnie Basteed, 4, has epidermolysis bullosa (EB), which leaves her with blisters all over her hands and face, and requires her to wear special bandages to protect her body.

The Ballinlough native said: “It hurts so much when they are changed, because, sometimes, my skin comes away with them.

“I wish I didn’t need to have my bandages changed on Christmas Day: I hate it. That would be the best Christmas wish of all.”

Her heartbreaking message has been shared as a part of a Christmas appeal by Debra, the charity that supports the 300 people in Ireland who have EB.

Bonnie was born on December 22, 2019 and missing patches of skin on her chest, bottom, and hands. Bonnie’s mother, Amy Basteed, said: “While we were over the moon when our beautiful baby came into our world, we were worried, too. We were told we could go home on Christmas Eve and everyone was head over heels in love with her, but it soon became clear something was badly wrong: This was a million miles away from the perfect Christmas we had dreamed of.

“Every time we changed Bonnie’s nappy, skin would come away and blister,” she added.

“Our tiny baby girl — who weighed just five pounds and 10 ounces when she was born — was in agony.” EB is caused by the absence of proteins between the skin layers, so the skin becomes painfully fragile and blisters at the mildest touch.

The condition can be difficult to spot in newborns, and when a GP assessed a blister on Bonnie’s toe, it was attributed to irritation from her sleep suit. A few days later, the blister had tripled and had spread as far as her ankle. Bonnie was sent for genetic testing at Our Lady’s Children’s Hospital in Crumlin, where EB and Debra were mentioned.

“As soon as we started speaking to the team at Debra and they visited us at home, we knew there were people who understood our situation and were there for us,” said Amy. “It was such a help to have their hands-on expert knowledge and clear answers to all our questions.”

When Bonnie started school, the charity arranged for a room where Bonnie’s bandages could be changed, an created an illustrated book, so that her classmates and friends could understand her condition.

The charity relies on public support to provide services to the families of those with EB, including home visits, psychological counselling, and funding for research.

A generous donor has agreed to match every donation Debra receives this Christmas up to €50,000. To donate,  visit: www.debra.ie