Mixi’s story: “my hair will grow back”

DEBRA has always been a charity close to my heart. My brother Charlie had junctional epidermolysis bullosa (JEB) and so I took on this fundraising challenge in memory of him.

I remember making a pact with a friend when I was 14 years old to ‘buzz’ our heads for charity on Prom Night! But when it came to it, we both forgot (or perhaps chickened out!). I’m now 20 years old, so the thought has been at the back of my mind for six years.

Alongside buzzing my hair, and because I don’t want it to go to waste, I also donated my hair to The Little Princess Trust. They provide free, real hair wigs to children and young people who have lost their own hair due to either cancer treatment or other conditions.

My hair will grow back, but those with EB have to feel its effects every day. As well as your skin, EB can also affect your hair by causing hair loss due to blisters on the scalp. This can also cause scarring.

I hope my fundraising inspires others to do something daring for a great cause like DEBRA. Many charities rely heavily on fundraising, the support of people. Their time and of course donations. It doesn’t have to be a huge challenge, and every small act brings benefits. I’ve cut my hair off which was very easy, and yes, I will be bald for a short while. But the outcome for the EB community is worth it.

Those who are thinking about taking on a fundraising challenge, go for it! Every penny counts in helping to find treatments and, hopefully, one day a cure for EB. Not only do you raise money, but you also raise awareness which is so important for a rare condition like EB.