“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! Continue reading
“And now the end is near and as we face the final curtain” (Sinatra)
Eight months ago Rod voiced the immortal words “I’ve had a great idea!” Continue reading
“So meet a bear and take him out to lunch with you
And even though your friends may stop and stare
Just remember that’s a bear there in the bunch with you
And they just don’t come no better than a bear” (Lyle Lovett)
I thought it helpful to let you know where we’re at with preparations since we leave in 16 days.
This week Rod broke the bike, again, I have a trapped nerve in my neck meaning I can’t ride, John has planned a route to Sweden by mistake and finally told us of his nut allergy. We’ve read of tunnels which sound like medieval torture devices and we found this….
“Together we could break this trap
We’ll run till we drop, baby we’ll never go back” (Bruce Springsteen)
You’ll have seen in the media recently that Hollywood producer Gordon Gray’s daughters, Charlotte & Gwenyth, were diagnosed with a variant of Late Infantile Batten Disease.
Their response was “Cure Batten, the Charlotte & Gwenyth Gray Foundation to Cure Batten Disease”
(I don’t presume to speak for them so please use the link above to read their story) Continue reading
“I like waking up after a bad dream, Makes it feel like life ain’t bad” (Eels)
On the day I took Ellie Mae to hospital for the last time Rod and I were waiting with her for an ambulance.
A First Responder Medic turned up and checked her stats and ensured she was comfortable. Although she was OK he agreed that her seizure activity wasn’t good and a hospital check was wise.
Waiting for the ambulance we told him about our trip to Norway (Rod never misses an opportunity to tell you about every ride he’s ever done) and joked that our only concern was bears.
It was here that the conversation took a strange turn.
The Medic commented “The thing with bears…”. Continue reading
“It’s rainin’ but there ain’t a cloud in the sky
Musta been a tear from your eye
Everything’ll be okay” (Bruce Springsteen)
I was in hospital two weeks ago and I called Ellie Mae a Superhero. I wasn’t referring to her as a Starfire type character with the power to harness solar energy, more like an X-Man, with a mutated genetic trait whose ability on this occasion was an immunity to drugs. (If you’re not a comic book geek you won’t understand any of that!)
Following a long period of epileptic seizures she had three doses of “Rescue Meds” at home to sedate her and break the cycle. At the hospital she was given four more without success.
But talking to the doctors we agreed she was a Superhero. Continue reading
“You better stop dreaming of the quiet life, it’s the one you’ll never know” (The Jam)
It feels appropriate to remind people of what we’re planning and why.
Over 6 days this Summer, Rod and I will ride a Tandem bike from Røros in Norway 500 miles north to the Arctic Circle Centre.
Apart from being a UNESCO World Heritage Site it’s also the location for the first reported cases of a condition called Batten Disease. A variant known as Juvenile Batten Disease affected 4 siblings in the town.
Why is that important?
Another variant, Late Infantile, affects my own children, Ellie Mae & Caleb.
There are approximately 100-150 children in the UK suffering from the various forms which cause blindness; epilepsy, jerks of limbs, loss of speech and swallowing skills, loss of mobility. Death is inevitable and may occur anywhere between early childhood and young adulthood.
Why a Tandem? Ask Rod.
Why the Arctic Circle? Ask Rod.
So July will see us set off to the Bear Stronghold of Europe to raise awareness and funds for the BDFA, who support children & families affected by the disease
To demonstrate stupid ideas and poor planning aren’t particular to this trip I thought I’d share the blog from another ride Rod planned. Continue reading