Eleanor’s Fundraising Story

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My dream is that one day there will be a magic cure for OI! I’m lucky that my OI is mild and generally it doesn’t stop me! However, when I do have a break a bone or when I’m aching and tired, sometimes I just wish I could wave a wand and be fixed. My family do too, but maybe OI is what makes me who I am and what makes me such a determined and independent person.


My first plaster cast when I was two

I’m Eleanor and I’m eight years old and like my Mum, Grandma and Great Uncle I have OI type 1. It was when I was five that I decided I wanted to do something to help find a cure for OI and this is what led me to start my fundraising journey for the Brittle Bone Society (BBS). My hope is that by raising money for the BBS it will not only help people with OI, but will help to fund research to know more about OI, and maybe one day they will find a cure.

My first fundraising venture was inspired by my Mum’s brothers; Uncle Rob and Uncle Phill. In the year 2000 (way before I was born!), at the age of 16 and 18 they completed a sponsored bike ride from Lands End to John O’Groats and raised £1231.75 for the Nuffield Orthopaedic Centre in Oxford. This was the hospital where their Grandma (my Great Grandma), Mum (my Grandma) and sister (my Mummy) were cared for with their brittle bones.

When I heard about how much they raised, I wanted to create my own challenge 21 years later to raise money for the BBS. I love riding my bike, but Lands End to John O’Groats was a little too far for a five-year-old, so I decided that because there are 206 bones in the adult human body, my challenge would be to ride 20.6 miles in 10 days (1 mile for every 10 bones). For little legs this was quite a long way, but I had my whole family supporting me and I actually finished in just seven days. Mummy rode her tricycle (she can’t ride a two wheeled bike), Daddy rode his bike and my little sister Alice travelled either on the tow bar of Daddy’s bike, on her bike with stabilisers or on her balance bike. It was lots of fun! One day I cycled all the way to the beach and back home again. My legs ached after that! The final mile of my challenge was cycling to school one morning. It was lovely and sunny, and when I arrived, I was surprised that my best friend, Sam, and my whole class were lined up outside the entrance cheering me through the gates. The school had wanted everyone to be there, but because of the pandemic they weren’t able to have too many people. It was amazing though and it really felt like I had done something that lots of people were really proud of. I even ended up in the local newspaper! As well as having lots of fun and raising awareness I managed to raise £2,101 for the BBS. I had hoped I might raise £100, so I was really shocked when the money kept on coming.

My fundraising hasn’t stopped there though. Last year when I broke my ankle, I felt a bit fed up. I wanted it to be fixed and I didn’t want my ‘special’ bones anymore. The problem is, you can’t just swap your bones and there still isn’t a cure, so I decided it was time to raise some more money. I couldn’t ride my bike or really walk very well, so I needed to come up with a new plan that I could do sitting down. I really enjoy crafting and making things, so I tried to think of something that I could make and then sell. That’s when my ‘Bobbles for Bones’ hair scrunchie idea came along.


                                                   Selling my scrunchies outside school

Lots of my friends like scrunchies and I love bright coloured ones, so I raided my Mummy’s fabric stash, and we got making. It was my right ankle that was broken, so I had to use my left foot to work the sewing machine. It wasn’t that easy because I usually use my right foot and I was still having problems with my left ankle that I had broken the year before, but nothing stops me, and it actually helped to strengthen it!

Sewing hair scrunchies

We started by making 30, but those sold straight away. We then made another 50, but before long those were sold as well. Our house ended up like a scrunchie making factory! Mummy was helping me sew them, Daddy helped thread elastic and Alice enjoyed turning them all the right way round so they weren’t inside out. I sold them to my friends at school, my Beaver friends and my Brownie friends.

Selling my scrunchies at Brownies

We set up a JustGiving fundraising page which was really easy and meant people could donate online if they wanted to, as well as add Gift Aid to their donation. Mummy shared photos of my scrunchies on social media which led to lots of orders, and we ended up posting scrunchies to friends and family all over the UK. Kind people even sent me extra fabric so I could keep making more scrunchies! We’ve made over 200 hair scrunchies so far and we’ve raised £586. I don’t think it is all about the money though because these scrunchies have helped raise awareness of OI and of the Brittle Bone Society (BBS). Lots of people have never heard of OI before, but people always want to hear more about why I am raising money, so I can tell them a bit about it. Before selling these scrunchies I didn’t really like people talking about my ‘special’ bones, but I don’t mind as much now.

So far, I’ve raised almost £3000 for the Brittle Bones Society, and I intend to raise lots more. I’ve just ordered my next batch of fabric, so there will be more hair scrunchies coming soon. I’m always thinking of new ways that I could raise money, so when I decide I’ve had enough of sewing hair scrunchies I might do another sponsored event or perhaps a cake sale, or maybe I’ll make and sell something else. Don’t feel like your small efforts can’t make a big difference, why don’t you use my ideas to start you off!

Here is the JustGiving link for Eleanor’s fundraising so far: https://www.justgiving.com/page/bobbles-for-bones

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