Ride Joburg for the Butterfly Children

On 22 November, Andrew and his friend Jason are taking on Ride Joburg, a challenging 97km cycling race through the streets of Johannesburg, South Africa, to raise money for a cause that has affected generations of my family.

Imagine being a child whose skin is so fragile that simply putting on your shoes or brushing your teeth can leave you with open wounds, and in severe cases just being awake, breathing and the slightest movement can be excruciating or life threatening. 

This is the reality of living with Epidermolysis Bullosa (EB), a rare, incurable genetic condition that causes the skin to blister and tear from the slightest touch. In its most severe forms, EB can be fatal. It's one of the cruelest conditions you've probably never heard of.

My mum, my brother and I were all born with EB Simplex. Growing up, painful blisters, wounds, infections, needles, bandages and salt baths were part of everyday life. Things other children took for granted could be agonising and now watching the next generation go through it is perhaps the hardest part of all.

My brother's two beautiful little girls, just five and three years old, are living with EB too.
They are funny, bright, determined and full of life and adventure. But watching them experience the physical and emotional pain I remember from childhood, and sometimes even worse, is heartbreaking. Seeing their tears, their wounds and the courage they show just to get through an ordinary day makes me wish more than anything that I could take their pain away.

Not a day goes by when EB doesn't affect our lives in some way. We often call ourselves the lucky unlucky ones. Unlucky to know this pain, but lucky that we haven't had to endure the most severe forms of EB.

Because for others, the reality is devastating.
In its most severe forms, EB can affect both the outside and inside of the body. Blistering can affect the eyes, mouth and throat, fingers can fuse together, and even the gentlest touch can cause severe wounds, making it difficult to move, eat and breathe. Some children endure a lifetime of extraordinary pain, and tragically, some lives are heartbreakingly short.

And that's why we're fighting for a future where no child or family has to endure this horrendous pain.

Inspired by my two little nieces, Andrew and Jason will be cycling through Johannesburg to raise vital funds for the DEBRA charity.

Every donation, however small, helps support vital work, and every share of our story helps raise awareness of a condition that deserves to be better understood.

Thank you for supporting Andrew and Jason, our family, and everyone living with EB.
For every butterfly child. For a future with less pain, more hope, and one day, a cure. 💜🦋