At every stage of my life, I’ve refused to let EB define me or hold me back. I was born with no skin on my left foot and right arm. The skin I did have blistered at the slightest touch. My parents were told I wouldn’t live for more than a week, and the doctors even said it would be better for me not to make it, because my life would be so hard. Imagine hearing that as a new parent.

It’s true that living with EB has been relentless. Even now, almost no one with my type of EB lives to see their 40th birthday. Each child born with EB – with skin as fragile as a butterfly wing – faces the same constant, excruciating pain I have to endure every day. But my parents always encouraged me to live my life. And now, having reached this milestone, I have one 40th birthday wish.

I want everyone with EB in Ireland to live the life they deserve to live. Reaching 40 shouldn’t be a miracle, but right now it is. You can help change that by donating today to help Debra fund life-changing research into EB.

Every year, on New Year’

s Eve, my family get together and I say, ‘What’s this year going to bring?’ This year, the idea of making it to 40 brought joy – because people just don’t make it to this age with this disease. But that joy was overshadowed by the reality of EB, because EB is always in control.

I’m used to feeling that combination of happiness and fear. I’ve only had cancer twice. That’s huge for someone my age with EB, which puts you at much greater risk from cancer. But that’s so wrong. No one should have to say in an excited way that they’ve only had cancer twice. I shouldn’t have had it at all.

EB is so cruel – but I truly believe no one is better placed than Debra to fight for a better future. The charity is like a family – to me, to the 300 people in Ireland who live with EB, and to all of our own families. Being connected to Debra makes me feel safe, because no matter how tough life gets, Debra is there.

As well as offering amazing personal support – from grants for nursing care to help with things like taxis so people are able to work – Debra funds more research into EB than anyone else in the country. As a rare disease, EB often gets overlooked. But just because the number of people with EB is small, it doesn’t mean we don’t matter.

As I write this letter, 80% of my body is covered in layers of bandages. Changing them takes four hours every other day and leaves me screaming with pain. I also have to live with the constant risk of a wound getting infected. Last year I was admitted to A&E with severe pneumonia and sepsis. The doctors told me if I had waited another 24 hours to go to hospital, I wouldn’t have survived. That scared the hell out of me.

With EB, life is always at risk. But I have always decided to live and keep living – because life is worth living. It breaks my heart to know children born with EB today still don’t have the treatments I always dreamed of. But by giving to Debra, you could help Debra lobby for more funding for studies into new treatments. In time, this could mean bandage changes no longer take hours every day. I can’t tell you how much pain that would save me and everyone else with this terrible disease.

With your support, I know a better future for people with EB is right there, in touching distance. Research could save lives, including my own. But Debra relies on people like you to fund all of its research, so please donate whatever you can afford today – and help my 40th birthday wish come true.