Bonnie’s first Christmas should have been filled with joy, but was shadowed by the realisation of her EB.
Your support can make the season brighter for families like hers who navigate each day with courage and hope.
When Bonnie was born, she was missing patches of skin on her chest, bottom and hands.
The doctors said not to worry. They weren’t sure of the cause. But, looking at her hands, they said Bonnie had probably just been sucking her thumb in the womb.
Amy and Andrew, Bonnie’s parents, thought maybe it was normal. If the doctors were sending them home, everything must be fine.
But unknown to them, Bonnie had actually been born with EB, her skin as fragile as a butterfly’s wing.
And because their story is anything but unique, this Christmas we’re asking you to give a special gift to Debra, to help transform EB support and awareness across Ireland.
This was a million miles from the perfect Christmas we’d 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 ten ounces when she was born – was in agony.
Then she got a blister on her toes. We took Bonnie to the GP, and because EB can be hard to spot in newborns, they told us it was just from her kicking her legs in her babygro.
We were sent home from hospital with Bonnie on Christmas Eve. But we were already worried something was seriously wrong.
Bonnie’s skin blisters and tears at the slightest touch. But after a few days the blister had tripled in size, reaching up to her ankle. We insisted on seeing a different doctor and – for the first time – finally our worries were answered.
If we’d known back then about simple things like silk socks that stop blistering, it would have saved our tiny baby so much pain. By giving a gift today, you could help Debra provide these essential items.
We’ll never forget what happened next. We were sent to hospital for tests and the nurses used an adhesive bag to collect a urine sample from Bonnie. It was a disaster. When they took the bag off, all the skin in the area just came off with it. Poor Bonnie was crying and screaming so loudly. Can you imagine? We were distraught to see her suffer like that. We felt so angry and confused – and so alone.
After the tests, at long, long last, EB was mentioned for the first time. And – thankfully – so was Debra. As soon as we started speaking to the team at Debra and they visited us at home, for the first time we knew there were people who understood our situation and were there for us. It was such a help to have their hands-on, expert knowledge and clear answers to all our questions.
Since then, I’ve read every single page of Debra’s website too. We’d be absolutely lost without Debra. There’s just no other support in our community.
We know the pain and heartache of EB. That’s why we’ve fundraised for Debra ourselves, and why we would love it if you could donate today. Your support can help pay for a family’s accommodation when a child with EB needs to be in hospital for specialist treatment.
As Bonnie approaches her fifth birthday, recently she asked us, “When will I be better? I want proper skin like my cousins… I want to be a different kid”. It’s heartbreaking that a baby born with EB in Ireland could still face the same struggles and agony that Bonnie has. But you can help Debra to support families directly and to fight to transform EB services and awareness across Ireland.
When Bonnie started pre-school and then big school, they provided information to the teachers and arranged for things like rooms where Bonnie’s bandages could be changed in peace. They even made an illustrated book – just like the one here – to help Bonnie’s classmates learn about EB. Nothing is ever too much.
could pay for essential items like seamless socks and therapeutic sheets to protect newborn babies’ precious skin.
could pay for a home visit, so our family support experts can share all the advice and expertise families need
could help pay for a family’s accommodation when a child with EB needs to be in hospital for specialist treatment.
Please use my gift to help create a better future for everyone affected by EB in Ireland.
