Hi I’m Oliver Jones, I am 11-years-old. I am a big brother who lives with EB…sort of! I have known about EB for as long as I can remember, even from before my little sister Matilda was born with EBS 9 years ago.
How have I known about it so long? Well, our family has a very long history of Autosomal dominant Epidermolysis Bullosa Simplex (EBS). My Mum, Aunty, Grandad, Great Grandad, Great Aunts, Great-Great Uncle, second cousin and my youngest cousin all suffer from EBS.
I have always felt so sad for my family when they are in pain from their blisters, sometimes it is hard to understand what it must feel like for them to have blisters on their feet and still have to go to school, work, play sports and live their life. I have always tried to help when I can, I piggy back my sister when her feet are too sore to walk, I support and encourage her when she has to spend time painfully popping blisters, I get her what she needs and try to make her laugh when she’s crying from the pain.
There is only so much I can do to help, so I thought how else can I help? Just over a year ago I convinced my mum to let me grow a mullet, she hates it!! I have loved my mullet and have not cut it since September 2019. In September 2020 I decided I wanted to do a fund raiser for EB, I thought what if I get sponsored to shave my beloved mullet off and donate the money to the EB research Partnership? And now, here we are “Ollie’s EB Fund-Razor”