‘I wish I didn’t need to have my bandages changed’
By Finnian Cox
Cork schoolgirl Bonnie Basteed has said her festive wish this year is not to have to change her bandages on Christmas day.
She’s living with Epidermolysis Bullosa (EB), a skin condition that leaves her with blistered skin on her hands and face and must wear special bandages to protect herself.
Her plea was made by Debra, a charity that supports the 300 people in Ireland living with the affliction, who are currently making their Christmas appeal.
Celebrating her fifth birthday just three days before Christmas, the Balllinlough resident described how changing the bandages is a painful experience.
“It hurts so much when they are changed, because sometimes my skin comes away with them,” Bonnie said.
She added: “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.”
EB is caused by the absence of proteins between the skin layers, which results in the barrier being extremely fragile and causes it to blister at the gentlest touch.
Bonnie’s mother, Amy, described their joy at getting home from the maternity ward before Christmas, but also their worries.
“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 said.
“Our tiny baby girl – who weighed just five pounds and 10 ounces when she was born – was in agony.”
When a GP first assessed a blister on baby Bonnie’s toe, they assumed it had been caused by her babygro. When it grew, she was sent for genetic testing at the Children’s Hospital in Crumlin.
“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,” she said.
“It was such a help to have their hands-on expert knowledge and clear answers to all our questions.”
As well as helping the parents, Debra also provides teachers with information, leading to them arranging a room for her to change her bandages in.
Additionally, they made a picture book to explain Bonnie’s condition to her classmates.
While their recent Run to 40 fundraising appeal involving Hollywood star Colin Farrell was a huge success, the charity still relies heavily on donations from the public.
They use the funds to run support services for the families, including home visits, psychological support and funding for research.
A generous donor has agreed to match every donation Debra receives this Christmas up to €50,00. Donations can be made at debra.ie.