Joseph’s Life

VIP Joey meets the French President

Posted by on December 17, 2012 at 12:29 pm

Saturday was very special. Joey went to the children’s Christmas party at the French presidential palace in Paris where he met the French President; Monsieur Francois Hollande and his partner; Valerie Trierweiler. Joey was invited to the palace along with some of his ELA buddies.  In total, there were 600 children invited and the palace was […]

Six years already

Posted by on October 9, 2012 at 12:41 pm

We marked Joey’s sixth birthday by spending Saturday afternoon at the bowling alley with some of his friends and classmates. After a few too many birthdays lost as to what we could organise for Joey and his friends, I took heart after one of the other Mum’s organised a party at a local play gym […]

Joseph celebrates the jubilee

Posted by on June 5, 2012 at 9:39 pm

Living in France didn’t stop us. We dressed for the occasion as well!

4 years old today

Posted by on October 5, 2010 at 2:23 pm

Happy fourth birthday Joey, our darling angel and hero.

First day at school….

Posted by on September 1, 2010 at 10:56 pm

Joey had his first day at school this week.  Well, school in a loose sense, but an exciting and big step for him and us nonetheless.  He has started in a ‘social, medical and educational’ centre called Ninon Vallin.  He will go there for two days a week and is one of seven children in […]

Happy Third Birthday Joseph!

Posted by on October 7, 2009 at 12:08 pm

Joseph on TV for ELA Joseph celebrated his third birthday on Monday with us and his grand parents who had just arrived from Ireland. This was his first birthday where he understood the thrill of opening cards and presents (along with his parents!), so thank you to everyone that sent something. The morning got off […]

Joey gets the green light

Posted by on March 20, 2009 at 12:09 am

Well after all the doom and gloom in my last post I have some good news! In fact, pretty much the day after the “doom and gloom post” Joseph seemed to start recovering much quicker. Maybe everyone reading the post sent good vibes? Who knows? I’m not the superstitious type, but it did seem a […]

Slow progress

Posted by on March 10, 2009 at 9:24 am

For several weeks I’ve been hoping to write a positive comment on Tri4Joe about Joseph’s progress. Something along the lines of “he’s fully recovered, and back to his old self again”. The truth is, unfortunately, that he’s is only recovering very slowly. In fact, there are times when we look at his tummy with its […]

Joseph recovering well

Posted by on February 4, 2009 at 12:20 am

I thought I’d just quickly write a quick post to say that Joseph’s operation did go ahead today and was successful. He is currently recovering in intensive care. The doctors are very pleased with his recovery so far – he even managed a cheeky smile when he woke up! He’ll remain in intensive care for […]

A surprise phone-call

Posted by on February 1, 2009 at 7:52 pm

I don’t know where to start. We’re all excited having just spent well over an hour on the phone with Professor Yanick Crow. Based in the UK, Prof Crow is the person who, a couple of years ago, discovered the four genes responsible for Aicardi Goutieres Syndrome (AGS). He has in the last 10 years […]