What We Did Last Summer

“This could be the last time” (Richards & Jagger)

For our Summer holiday this year Rod and I decided to cycle the length of Norway.

There was a bit more planning to it than that, although not a lot more thought and I would like to state categorically that the whole project was Rod’s stupid idea.

I wanted to sign off this blog by letting you know how much your support meant to our project before taking a very long break!

We wanted to raise money for the BDFA and to raise awareness of Batten Disease. Although we shouldn’t be competing with other conditions there is an element to Batten Disease where whenever you tell someone your kids have it you then have to explain what “it” is.

A conversation about Batten Disease often leads to the phrase “blind, bedridden & demented”, since December 20 2013 I have repeated it over and over, explaining to family, friends and strangers what will happen to my kids. Many times I’ve wished I could say the name and have people say “Shit, that’s awful, I’m so sorry”

With awareness comes support, research and ultimately hope for those affected.

In the South of Norway is a small town called Røros . It’s a very pretty place and acknowledged as a place of interest as it’s achieved UNESCO World Heritage Site status.

More importantly it’s the town where the first case of Batten Disease was diagnosed. In a family with 4 children 2 showed signs of the disease. The other 2 children were sent away fearing an environmental cause. When they developed the same symptoms the town doctor, Christian Stengel diagnosed the condition.

Røros would be our start point before cycling 500 miles over 5 days to the Arctic Circle Centre. The line of latittude on the globe marking the start of the Arctic actually passes through its gift shop!

To make it more of a challenge we cycled the whole thing on a Tandem. Even Rod’s family won’t have had to stare at his bottom for five days. It’s really not very easy.


Completing the ride in this way allowed us to connect with lots of different people. We had retweets and personal donations from a number of big names in the cycling world, Journalists, a Dame and a Knight of the Realm as well as lots of free support from companies and our local bike shops.

We hit our fundraising target before starting the trip but more importantly we talked and talked and talked.

We had a number of interviews for local and national press, BBC radio and the local paper in Røros. We were even interviewed whilst on a lunch break over Facetime whilst logged into the free wifi at a Norwegian garden centre!

The Arctic is a strange place to reach as we weren’t sure what to expect. The scenery was wonderful but the place itself was just a cafe and a gift shop selling “I’ve been to the Arctic” T-shirts! Norway was a lovely country and well worth a visit, although perhaps not on the back of a bike.

So far you have donated £12,569 on our Just Giving site.

Thank you.

More importantly you have read and shared our story. Our Facebook page had 590 people like it and share it with friends.

This blog has been read 34,000 times and that’s not just me & Rod rereading! The page celebrating Ellie Mae’s life 14,000 times.

I don’t know 34,000 people and I sincerely doubt it’s 10 people who’ve read it 3,400 times each so the only way it’s possible is that you have read it and shared it and your friends have done the same. The only way to achieve the support for everyone affected by this Disease is to continue on that path.

(I understand the 763 views of me reading the Gruffalo on Facebook may have been largely due to one child)

Thank you for your money and thank you for your interest. Why not have a look at the BDFA website and see if you can learn some more about this disease. Join their membership, buy something from their shop, send all your friends “Cycle to the Circle” notelets for their birthdays, just keep the story moving.

Thank you so much for all the support, we hope you enjoyed the ride.

WP_000061 (2014_09_17 21_44_43 UTC)IMGP1434 (2014_09_17 21_44_43 UTC)


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