A four-year-old girl from Cork, Ireland, is hoping for a very special Christmas gift this year: to avoid the painful process of having her bandages changed on December 25th. Bonnie Basteed suffers from epidermolysis bullosa (EB), a rare and debilitating skin condition that causes painful blisters to form all over her body.
Bonnie’s condition requires her to wear special bandages to protect her fragile skin. ”It hurts so much when they are changed, because sometimes my skin comes away with them,” she shared. ”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.”
Bonnie’s heartbreaking plea is part of a Christmas appeal by Debra Ireland, a charity that supports the 300 people in Ireland living with EB. Bonnie was born on December 22, 2019, with missing patches of skin on her chest, bottom, and hands. Her mother, Amy Basteed, recalls the initial joy of Bonnie’s arrival quickly turning to worry.
“While we were over the moon when our lovely baby came into our world, we were worried, too,” amy said. “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 that hold skin layers together, making the skin extremely fragile and prone to blistering even from the slightest touch. The condition can be tough to diagnose in newborns, and bonnie’s initial blister was initially dismissed as irritation from her sleep suit. However, the blister quickly worsened, prompting further investigation and genetic testing, wich confirmed the diagnosis of EB.
“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,” Amy said. “It was such a help to have thier hands-on expert knowledge and clear answers to all our questions.”
Debra Ireland has been instrumental in supporting Bonnie and her family. When Bonnie started school, the charity helped create a dedicated space for her bandage changes and even produced an illustrated book to educate her classmates about her condition.
The charity relies heavily on public donations to provide vital services to families affected by EB, including home visits, psychological counseling, and funding for research.This Christmas, a generous donor has pledged to match every donation Debra Ireland receives up to €50,000. To contribute and help make Bonnie’s Christmas wish come true, visit www.debra.ie.
## “A Silent Wish for Christmas: A Four-Year-Old’s Battle with EB”
**world Today News Exclusive Interview**
**World Today News**: Thank you for joining us, Dr. Fiona O’Connell, a leading expert on epidermolysis bullosa (EB) at the Children’s Hospital, Cork. Recently, the story of four-year-old Bonnie basteed touched the hearts of many. Bonnie suffers from EB and her Christmas wish is to avoid the pain of bandage changes on Christmas Day. Can you please tell our readers more about this condition and its impact on children like Bonnie?
**Dr.O’Connell**: It’s a privilege to be here. EB is a rare, inherited genetic condition that affects the skin, making it extremely fragile and prone to blistering.Imagine your skin being as delicate as tissue paper; the slightest touch, friction or even normal activities like scratching can cause painful blisters. This makes daily life incredibly challenging for children like Bonnie.
**World Today News**: Bonnie bravely endures countless bandage changes every day. How crucial is proper wound care for children with EB?
**Dr. O’Connell**: Wound care is absolutely essential. The blisters, unluckily, are prone to infection. Frequent bandage changes are necessary to keep the wounds clean,prevent infection,and promote healing. This, though, can be incredibly painful for them. We strive to minimize discomfort using various pain management techniques, but it’s a continuous battle.
**World Today News**: Bonnie’s story highlights the hidden struggles of children living with rare diseases. What are some of the biggest challenges facing families dealing with EB?
**Dr. O’Connell**: Families face enormous challenges on many levels. Beyond the physical pain and constant medical care, there’s the emotional toll. Children with EB often experience social isolation due to their fragile skin and the need for frequent medical attention. Simple things, like going to school or playing with friends, become tough. Financial strain is another major concern as EB frequently enough requires specialized treatment and equipment.
**World today News**: What can be done to support children like Bonnie and their families?
**Dr. O’Connell**: Awareness is key. Fundraising for research into treatments and potential cures is vital. Equally important is providing emotional and financial support to families. Organizations like DEBRA Ireland offer invaluable resources and a network of support for families navigating the complexities of EB.
**World Today News**: Dr. O’Connell, what message woudl you like to share with our readers about Bonnie’s Christmas wish?
**Dr. O’Connell**: Bonnie’s story is a stark reminder of the silent struggles faced by children with rare diseases. This Christmas, let’s extend our compassion and understanding, and help shine a light on the need for continued research and support for those living with EB. Perhaps, one day, children like Bonnie can truly experience the joy of Christmas without the burden of pain.
**Thank you, Dr. O’Connell, for your time and valuable insights.**
