‘She often says she wants to be someone else’
A brave Cork man with a fear of heights is getting ready to leap from a plane to raise awareness about a rare skin condition battled by his niece.
Four year old Bonnie Kim Basteed fights epidermolysis bullosa (EB) every day and often experiences excruciating pain.
She is one of around 300 people in Ireland living with the incurable genetic illness caused by missing proteins which bind the skin together. In the condition’s most severe cases, it can result in severe blistering which takes hours at a time to bandage.
“She often says she wants to be someone else, and this really hurts me to hear as a mam of a child so young, but we reassure her she is the most special child and without her, we would fall apart,” said mum Amy Basteed, 30, from Ballinlough.
Now Amy’s brother – Bonnie’s uncle James Stanton – is gearing up for a nerve-jangling tandem skydive to raise funds for Debra, the national charity which supports people living with EB.
The daring challenge takes place at the Irish Parachute Club in Clonbullogue, Co. Offaly, at the end of this month.
“Bonnie and I are very close, we have a brilliant relationship and she is my best buddy,” said dad of three James.
“She also has a very close relationship with my own kids, she brings us all a lot of joy and she is super smart.
“I have a fear of heights, but Debra is a very important part of Bonnie's life and provided a lot of advice and support to Amy and her husband Andrew when they needed help,” he added.
James, from Mayfield, has set a fundraising target of €2,500 and has already raised over €1,900.
Amy said her little girl, who attends montessori school, shows remarkable bravery despite the pain she is forced to endure. “The challenges change the older she gets, bandage changes become more difficult as she begs us not to touch them as they are too sore,” she said.
“Losing her hair is really starting to affect her mood as she doesn't understand why it falls away.
“Hearing a tiny little girl howl in pain is something that no matter how many times she goes through, it breaks our hearts every single time. But she is so strong,” Amy added.
Diagnosed with EB through genetic testing at Our Lady’s Children’s Hospital in Crumlin, Bonnie does not let the illness keep her from her favourite things, which include arts and crafts, singing and baking.
“The most important thing in our lives is our daughter Bonnie and giving her the best childhood and life experience, with or without EB she is the beating heart of our lives,” Amy said.
To donate to James’ fundraising campaign for Debra, visit idonate.ie/fundraiser/SponsorBonnie13.
To find out more about EB and Debra’s work, visit debra.ie.