4 years old today
Happy fourth birthday Joey, our darling angel and hero.
Happy fourth birthday Joey, our darling angel and hero.
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]