Joseph’s Life

Operational delays…

Posted by on January 26, 2009 at 12:10 am

Thank you everyone for all your kind comments and well wishes for Joseph. Unfortunately, they were all a bit premature and you’ll have to send them all again on the 3rd of February! Joseph checked into the hospital (with the help of his parents of course) on Wednesday 21st January and stayed in overnight in […]

Merry Christmas & Happy New Year

Posted by on December 19, 2008 at 4:48 pm

Before we head away to spend Christmas and the New Year with family in the UK and Ireland, I just wanted to write an update on Joseph as we haven’t done one in ages and also to wish you all a very happy Christmas and New Year. Joseph is in better form after a fairly […]

We’re not alone

Posted by on November 10, 2008 at 1:30 am

Last weekend we went to Center Parcs in Sologne (near Orleans, a little south of Paris). The weekend, which was organized by ELA, was intended to bring together many of the families in France who are affected by leukodystrophy. We were a little apprehensive at first, which I think is natural for newcomers since we […]

2 years young

Posted by on October 15, 2008 at 11:05 pm

I watched Joseph drift off to sleep tonight and the usual thought ran through my mind – he looks so perfect.  I sometimes don’t want to or can’t believe that Leukodystrophy and the heartache that it brings is part of our everyday lives. Joseph is now 2 years young and is still not rolling, sitting […]

One day at a time

Posted by on July 4, 2008 at 12:27 am

On Monday, Joseph enjoyed playing with a big blue balloon at the psychomotricienne’s, whilst I had a bit of a moan about not coping very well with complete strangers asking me what’s wrong with Joseph.  I don’t want to be rude, but there are days when you just want to do your shopping in peace […]

2 weeks to go…

Posted by on July 1, 2008 at 12:11 am

I did the second of my two big “brick” sessions on Saturday (remember a “brick” is a training session consisting of biking and then running).  I decided to take the advice of my friend Gary and switch the 106/28 and 106/35 sessions.  So Saturday I did the 106km bike followed by 35km run.  One word […]

The word is spreading

Posted by on June 24, 2008 at 10:50 pm

We’re so delighted to read tonight that Shane Stokes of has very kindly posted a note on Matt’s Ironman.  On the UK side of things, Lynda Carthy from the Myelin Project UK has also included a write up on their website in the fundraising section. We are very touched and humbled by the support […]

3 weeks to go…

Posted by on June 23, 2008 at 12:42 am

Finally the sun is shining in the Alpes.  Whilst northern Europe (according to my parents) has been basking in summer for the past month or so, we’ve been having to deal with constant rain and cold. So what better way to celebrate the sun and heat and go and do the “La Mure” cyclosportif just […]

Thank you

Posted by on June 19, 2008 at 11:19 pm

Whilst feeding Joseph at lunch time I noticed an appeal on telly that made my heart leap.  It started off with Zinedine Zidane kicking a football against a steel gate and every time the ball hit the gate, the ball fell to the ground.  The voice-over said (in my best French/English translation): ‘Leukodystrophy paralyses many […]

4 weeks to go…

Posted by on June 15, 2008 at 11:17 pm

I swear I only wrote “5 weeks to go” yesterday! Where does the time go? It’s official: not only am I nervous, but the panic attacks have started. I had my first “losing control” dream last night. I get these a lot whenever I’m stressed by something. These dreams often involve my teeth crumbling to […]