Mar 11
16
Stealing hearts
Matt insists that 2011 will be a better year. So far, so good. Matt started his new job in January, Joey’s new cousin; Benjamin Matthew Brooker was born on the 12 February, and Joey will have another new cousin in Ireland in mid June. At the end of February, we spent a lovely week in Ireland catching up with family and friends. Joey had great fun with his 8 Irish cousins. Jack, the youngest, spent the week giving Joey loads of kisses ‘to make him better’ and was tirelessly showing Joey ‘how to eat’. His older cousins were asking lots of questions about whether Joey will ever walk or talk. It’s always difficult to find the right words or know how to respond.
Love and special thoughts for this Christmas to all of you….. our dear friends and family who are near, far or no longer on this earth but with us in our hearts.
Hope Santa visits – his reindeers and sledge are well equipped for the snow so he has no excuses.
Nov 10
22
A day of magic
Thank you Zinidine Zidane, all the team at ELA and the volunteers and staff at Disneyland for a magical day at Eurodisney in Paris, on Saturday 20th November 2010.
800 ELA families were united in putting aside their struggles for a few hours and instead enjoy the sunshine, camaraderie and sparkle of Disneyland. We were guided by volunteers, led to the most suitable rides, taken to the front of queues, and given complementary meals. We were also joined by a long list of celebrities who came to help and raise awareness about leukodystrophy for the media and the public.
Joey was a little bit tired from the long journey there but enjoyed a ride on a rocket with his Daddy and was in awe of the music and lighting all around. Sadly, he fell asleep for the wonderful Disney parade finale, despite the very loud music! and woke up when the last float passed by. Never mind, hopefully there’ll be another opportunity ahead.
Nov 10
10
Joey amongst the stars
On Saturday 13th November 2010, Joseph will appear on National French TV with some celebrities who are giving their time to help with a national fundraising exercise for ELA. For friends who are in France, the show is called: ‘Les stars se depassent pour ELA’ and will be broadcast on TF1 at 20h45 local time. Joey will be with some of his friends from ELA and it should be an interesting weekend!
The following weekend we return to Paris where Joey will spend another day with his ELA friends at Disneyland. Rumour has it that we’ll be meeting Zinidine Zidane, so we’ll go equipped with jerseys and photos for signing!
In general, Joey is in great form and making progress all the time. He is making a really big effort to be understood, using his eyes to look at what he wants and intonation in a yes and no manner. It’s still a bit of a guessing game, but when we get it right, he now rewards us with a big smile and a mmmmmmmm. Matt and I are always impressed by Joey’s fighting character and determination.
Our friend, Uncle Bill, spent some time here with us in September and together with Matt, they have built a superb terrace around part of the house. This new ‘room’ gives Joey ample outdoor freedom in his trotter and we’re all so thrilled with it. So thank you and super well done to Bill and Matt for all the hard work. Next job is to put up a railing to stop Joey from sailing off the edge. I also want to create a sensory garden in and around the terrace for Joey and his friends to enjoy.
Oct 10
5
4 years old today
Sep 10
1
First day at school….
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 a group called ‘les poussins’ (baby chickens). The centre is specially adapted to help socialise, educate and care for children with multiple disabilities from the age of four to eighteen.
We brought Joey into the centre for his first day in his little trotter (walking frame with wheels) and within seconds he was off scooting down the wide open corridors exploring each room. And that was it. No clinging, no tears (well, apart from his mothers!), not even a glance over his shoulder to see where we were. With his cheeky grin in full use, already after one day, he has managed to charm the nurses, teachers and carers, along with a little girl in his group!
Hopefully, this new start at Ninon Vallin will help Joey’s progress in many ways. We will work with a team at the centre to develop a personal plan for him. This plan will aim to help meet some of his special needs, for example, exploring techniques to help him communicate etc. He will also have physiotherapy and other various therapies at the centre. He will continue to have one session of physio at home and all other consultations will continue at hospital as normal (eg: neurological and gastric related appointments).
Meanwhile, with two days a week on her own, guess who’ll be wiping down cobwebs, not in the house, but from her bike (and credit card – Matt)! Big grin.
Jun 10
27
Ed’s Tri4Joe: Race Day!
The big day has arrived for Ed – today is Ironman France in Nice. We met Ed earlier this week and he was look very fit and ready for the race today. We know he can do it and we know that he’s going to sail round the course! We’re keeping our fingers and toes crossed for him and willing him on.
You can monitor his progress here on Ironman Live.
So far he’s doing very well – he finished the swim in just over an hour in what looked like perfect conditions – a nice (pun intended) calm sea. He’s now on the big and going very smoothly…
Go Ed! Go Ed! Go Ed!
Latest update: Ed’s finished!!! Unlike England’s football performance today against Germany, Ed has delivered the goods! He’s just crossed the line in a final time of 10 hours 55 minutes.
Thanks to everyone who has supported and sponsored Ed. If you haven’t sponsored him yet, then it’s not too late!
Jun 10
6
Family Inc.
Before Joseph arrived into our lives, Colette and I used to spend most of our lives riding our bikes together. So much so in fact, that Colette got rather good at it and competed internationally, including the Cycling World Championships in 2003 and 2004. It was because of cycling that we fell in love with France and ended up moving here in 2004.
Cycling was a big part of our lives.
If it wasn’t for Joseph’s horrendous illness we would now be enjoying watching him take his first wobbly pedal strokes on his own little bike, and perhaps even doing our first family bike ride together (although Joseph would be a bit young for the big Tour de France mountain climbs!). Joseph would also be starting school and this would have given myself and Colette much more time together to go cycling just like we used to.
Sadly, due to leukodystrophy, it is highly unlikely that Joseph will ever pedal a bike stroke and we will just have to quietly watch our friends’ and neighbours’ children make their first brave pedal strokes. We just want to be a normal family.
Well, the good news is that this weekend we took a big step towards normality. We bought a new bike chariot in which we can carry Joseph and go for rides together… as a family! Freedom and unity at last!
To celebrate we went for a bike ride and a picnic in the lovely summer sunshine. It was a classic French scene that we have always dreamed of: a family sitting in a walnut orchard surrounded by their bikes and pretty countryside. The only thing missing was a bottle of wine. Next time!
We’re now looking forward to some exciting adventures together, perhaps even a camping trip! The sort of things other families do.
Jun 10
6
Ed’s Tri4Joe: 4 weeks to go
Ed’s training is going well (mostly) and finally he has been blessed with a decent run of good weather. Not only will this benefit his training, but it will also give him a chance to tan his legs a bit, which is a highly important attribute of any triathlete!
Swimmers must be the most dedicated of athletes. Endlessly ploughing up & down a pool watching the tiles go by, can be no fun for anybody. At least with the cycling, running & skiing pursuits it gets you out in the great outdoors. I was considering this & obviously not concentrating on the session this week. The 3km swim will probably be the only pool time I get for the next 2 weeks, not ideal. More…
May 10
30
Ed’s Tri4Joe: 5 weeks to go
Introduction
On 27 June 2010, our super-hero friend Ed Nicoll will compete in Ironman Nice (3.8km swim, 180km bike ride and a 42km run) and raise money for the European Leukodystrophy Association (ELA).
This will be Ed’s first Ironman, but he is not by any means a stranger to endurance sports: Ed has already competed at cross-country skiing in the Winter Olympics and competed in various triathlons in the past, but never anything comparable in size to an Ironman, so this will be quite a challenge for him!
Ironman Nice is widely reputed to be one of the toughest Ironman races since it involves a sea swim and a mountainous bike course.
Ed’s been training for this event since the start of the year . You can follow his account of the final few weeks of his race preparations here and, of course, sponsor him via his page on AiderDonner (for non-French readers, this is the equivalent of JustGiving.com in the UK).
5 weeks to go
Wincing with pain on the run today, after only 7km and I’m already thinking I may just sack it this lap and go home, never mind another 14km. It makes me finally realise that what everyone has been telling me, that the final leg in any Ironman Triathlon is going to be the toughest. Finishing the event will be a mental challenge, not purely a physical one. More…