Cure EB, it's in the name.

We'd never heard of EB until Fleur was diagnosed at 6 weeks old. We had already settled into home life with a new baby and as a family of four, and certainly didn't expect what was to come.

We will always consider ourselves "lucky" that Fleur's EB is in the middle on the spectrum of severity yet also now understand that this is still a difficult and painful condition to manage.

Fleur has incredibly delicate skin, and we have to pop blisters (bubbles) daily, be very careful when out and about and manage any trips and falls with great care, it's very painful and can cause Fleur to have some really tough days.

Although there's no cure or treatment for EB YET, charities like cure EB (created by parents) and us (Me, Jason, Ozzie and Fleur) really do believe there will be one day very soon and fundraising is one way to get closer to this.

I would say I'm doing this to show Fleur that she can do difficult things, however it's something she has taught me many many times in just 5 short years, as well as how to be brave.

We're so proud of her, and also Oscar in adapting to EB and everything that comes along with it yet equally so hopeful that with the right research and science life can get a little bit easier.