Butterfly with red wings and white circles in each corner of each wing sitting on a metal strip on a wooden plank. Photo by Regis Vaesken

2023 Grateful 46: Butterfly skin

I’ve only recently discovered that I can watch some, not many, but some Irish TV programmes on RTE Player. After catching up on the goings in Carrickstown, I was scrolling to see what else would catch my eye and saw that Johnny Sexton had been on The Late Late Show. He’s always good for a watch, I thought. The man never seems to age.

Ireland had beaten France in the rugby that same day but he was taking time out to promote a charity DEBRA Ireland.

I’d never heard of them, And I’d never heard of EB – the medical condition for which they are fundraising to find a cure.

EB (epidermolysis bullosa) is a genetic skin blistering condition. Babies born with EB have skin that can blister at the slightest touch. Currently there is no treatment or cure.

Some blister internally and externally. It doesn’t bear thinking about. Children with EB are often called butterfly children as their skin is like butterfly skin, as delicate as a butterfly’s wings. The charity’s ambassador Emma Fogarty had the idea to open a butterfly garden and got a Kildare hotel to host it. It’s a place where people can go and reflect, a respite from reality.

DEBRA Ireland is part of the more extensive international network of DEBRAs worldwide.

DEBRA International is a worldwide network of national groups working on behalf of those affected by EB. The first DEBRA was formed in the UK over 30 years ago and there are now over 40 DEBRAs around the world.

Nineteen-year-old Claudia Scanlon was sitting beside him and the pair explained what it was about, Claudia telling how she lives with EB and Johnny urging us to support the cause. Both were inspiring. It’s not my usual TV (I don’t have a TV) but it was everything TV should be – entertaining, inspiring, and educational.

EB is one of the countless diseases I thankfully don’t have and know (knew) nothing about. For that, I’m grateful. For Sexton’s reminder that even in times of financial uncertainty we shouldn’t forget those who need assistance to continue doing what they’re doing, I’m grateful too. It’s difficult. Every third or fourth post on my FB feed today was asking me to donate to something. Perhaps this is the algorithm at play. They know I give and because I give I’m asked to give again, and again, and again.

I’ve wondered if it’s better to support just one charity or to give a little to many. I don’t know. I do what feels right for me.

This week, it’s DEBRA Ireland. Next week, who knows? One thing is for sure: there will never be a time when I’m not asked. The world is hurting.

I came across this gospel hymn today that cemented my thinking.

If you’re asked to give, at least consider it. The little bits add up. As Mother Patrick, a nun I had in primary school said, it would take just 10 mins to clean the city of Paris if everyone cleaned outside their own doorstep. The same applies here, no? If everyone reading this gave €5 or $5 or £5 or whatever they could afford this week, then DEBRA would be one step closer to finding a cure for butterfly skin.

Just a thought.

PS If you’re a walker/hiker, then check out their Kerry Challenge. It’s sold out for this year, but you can always get on the waiting list. It could be the excuse you need to visit Ireland.

Photo by Regis Vaesken





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