The word is spreading

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 we’re getting, from all corners of the world, from Saudi Arabia to Australia, Canada, USA, Singapore and home to Ireland, the UK and here in France.  Thanks to everyone’s efforts so far, we have raised 1,900 euros for the ELA and 1,750 pounds sterling for the Myelin Project UK.  I know there is lots of family fundraising activity going on in my home town in Fermoy, County Cork in Ireland, and all around the country with cousins and friends doing a great job of emptying people’s pockets (and their own)! The same fun is going on with Matt’s family who live in Hampshire, Bristol and London.

On a slightly different note, I discovered yesterday that Oenone Wood, a professional female road cyclist is the Australian Ambassador for the Leukodystrophy Association in Australia.  I have huge respect and admiration for Oenone as a cyclist and even more so now that I’ve discovered this.  I’ll have to get my thinking cap on as to how I can maybe get fit again and get women’s cycling on board for a Leukodystrophy fundraising project in 2009!  Any ideas welcome.

Elisabeth is Joseph\'s PsychomotricienneJoseph has been busy as usual with his various sessions.  He had psychomotricienne yesterday and then, physio, speech therapy and an eye specialist working with him today.  He is also getting some changes made to his corset seat to give him a bit more comfort as he grows.

For his eyes we need to focus on stimulating his left side in particular as he tends to turn his head instead of moving his left eye. Eye exercises His speech therapist is pleased with Joseph’s pre-verbal antics of trying to imitate voice tone and expressions.  He has also started putting his fingers into his mouth which is great news.  Joseph has no words or recognisable sounds but he can do lots of aarrreeeggghh type sounds and shouts aaahhh to get himself attention.  He also has the most endearing quivering lower lip if he’s not being understood.  We’re getting fairly good at interpreting his different cries, much like you do when you have a newborn baby but ultimately, it’s guesswork and we work through the checklist until finally the tears stop.  It can be sometimes frustrating because, as Joseph isn’t mobile in any way and cannot use his hands or arms, the only way he can get himself understood is through his cries.

Having funEvery now and again we can guess what’s going on with him by reading certain looks or expressions in his face.  No marks for guessing what his favourite toys are then?

I’ll leave it at that and sign off now.  Thanks again to you all.

Colette xxx

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