Four-year-old with rare condition has heartbreaking Christmas wish

It is a condition that hit the headlines recently when Colin Farrell ran the Dublin Marathon to raise funds for Debra Ireland with Emma Fogarty.

And now four-year-old Bonnie Basteed, who suffers from the same painful skin condition epirdermolysis bullosa, has only one Christmas wish and that is not to have her bandages changed on Christmas Day – a painful but necessary procedure.

Because of her epidermolysis bullosa (EB), Bonnie has blisters over her hands and face and has to wear special bandages all over her body.

‘It hurts so much when they are changed because sometimes my skin comes away with them,’ Bonnie says.

Bonnie, who is from Cork and will turn five on December 22, was born with missing patches of skin on her chest, bottom, and hands.

‘While we were over the moon when our beautiful baby came into our world, we were worried too,’ says her mum Amy, 30, from Ballinlough. ‘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. 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, meaning the skin becomes ultra fragile and blisters at the mildest touch.

It can be difficult to spot in newborns and when a GP assessed a blister on Bonnie’s toe, it was attributed to her babygro. A few days later, the blister had tripled in size and had spread as far as her ankle.

Bonnie was sent for genetic testing at Our Lady’s Children’s Hospital in Crumlin, Dublin, where, for the first time, 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,’ Amy says. ‘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 provided information to the teachers and made arrangements for a room where Bonnie’s bandages could be changed.

Debra also made an illustrated book, so that her classmates and friends could better understand her condition.

Despite the success of the recent Run to 40 fundraising appeal involving Hollywood star Colin Farrell, the charity still heavily relies on public support to provide a range of services to the families of those with EB. These include home visits, psychological support and funding for research.

This Christmas Debra is asking the public to help them raise more funds to support children like Bonnie. A generous donor has agreed to match every donation Debra receives this Christmas up to €50,000 – donate today at debra.ie and your gift will be doubled.