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!

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.

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…

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…

Raises 4000 Euros for ELA

Last weekend we were invited once again to the The ELA Cup organized by our local football team AS Gresivaudan (ASG) at Pontcharra. This year’s edition of the tournament took place in perfect conditions and saw 16 under-13 teams from all over France and as far afield as Germany demonstrating amazing football skills in the beautiful surroundings of the sports ground in Pontcharra.

This was the third year that the tournament has raised money for ELA and it was the most successful so far:

• During the opening ceremony all the teams arranged themselves to form the letters “E”, “L”, and “A” on the main football pitch.
• More fund-raising initiatives took place including a tombola to win some signed professional football shirts, a dedicated ELA tent, quad bike racing, and much more.
• The addition of a new prize named after Joey – “The Joseph Swift Cup” – awarded to the team having the highest score in quiz about the ELA and leukodystrophy.

All in all, not only was there some great football played, but the tournament also managed to raise over 4000 Euros! In addition it also received two full pages of coverage in the local newspaper the Le Dauphiné Libéré.

Once again we thank Thierry Pineau and everyone at AS Gresivaudan for their amazing energy, hospitality, and dedication.

Joseph’s lovely Granny, Lynne, died a few weeks ago (23 April) and today we should be celebrating her 68th birthday. The past few months have been emotional and stressful and a whirlwind of journeys to the UK to be with Lynne and the rest of Matt’s family.

Throughout all the shock and sadness we’ve felt over the past few months, Joey has been our anchor and our rock. His smiles and amazing nature has carried us through the toughest days, especially our 18 hour long and final journey back to the UK to say goodbye to Lynne.

Joe’s medical check ups continue and in April he had his first set of botox injections to reduce spasticity in his ankles. We’ve been told by doctors that this is a neurological problem caused by an erratic flow of nerve impulses sent from the brain to the muscles which causes excess contraction in one muscle group.  In Joseph’s case, his toes were remaining pointed and he couldn’t plant his heel on the ground when in his standing frame or trotter and putting on his shoes was also very difficult. A check up with the orthopedic doctor last week confirmed that the spasticity in Joseph’s ankles is no longer localised, it is in fact spreading to his thighs and hips. So, Joey will be having regular sets of botox injections at the hospital to reduce this spasticity.

In other areas, we had very good news in March when we attended the annual general meeting for ELA (European Leukodystrophy Association) in Paris. For the second time we met Professor Yanick Crow who gave us an update on his ongoing work on Joseph’s illness (Aicardi-Goutieres syndrome) and also his plans for the coming few years.  Professor Crow has dedicated his entire career to AGS and has almost single handedly discovered the existing genes that cause the different types of AGS which allows us to have a diagnosis for Joey’s illness.  Thanks to the ELA and also to the European Union, Professor Crow has recently received a substantial amount of funding to continue and expand his amazing work and team.  This is a massive step for everyone affected by AGS and raises our hopes for learning and understanding more about AGS and maybe one day finding a treatment(s), or dare we suggest a possible cure for reversing the brain damage already done?

The next few blogs will tie in Joey’s ongoing progress alongside a race countdown for our friend Ed Nicoll who will be competing in Ironman Nice on 27 June 2010 and helping us raise more money for ELA.  Ed lives near us here in France and is packing in his training with a very busy work and home life, so we are deeply touched by his madness to fit in an Ironman in honour of Joey and all other leukodystrophy sufferers.

Joseph had a great Christmas and New Year and was utterly spoiled by his grand parents and auntie and uncle. We think this year was the first year that Joey started to understand and get excited with presents. Like most children of his age (perhaps a bit younger) he seemed more interested in the wrapping paper, whereas his daddy (me) was more interested in his presents – especially the remote controlled flashing police car that his aunty and uncle brought him.

We were hoping for a white Christmas but the weather got really warm and wet, so sadly we could not introduce Joey to the Swift family’s passion for sledging. Even more frustrating was that the snow arrived in force the day after everyone left for England. Joey loves the snow (almost as much as daddy) especially leaping up and down in powder snow.

You’ll also see from the photo that we have discovered that Joey (again like his daddy) has an obsession with fire. We literally have to pin him down in order to prevent him from burning himself on candles. He’d stare at them for hours if he could!

Anyway, thank you everyone for your continued good wishes and support. Joseph has continued to make steady progress throughout 2009 and the signs are (fingers crossed) that he’ll continue to make progress in 2010.

Donation page update

We have just closed both our EUR and GBP Paypal accounts and will shortly forward the balances to their respective charities (ELA and Myelin Project UK). I could see very little point in keeping these accounts open since Paypal take a significant percentage (2-3%) commission and also do not automatically handle national charity related tax relief schemes (e.g. Gift Aid in the UK). I have updated the donation page so that the donation buttons now link directly to the ELA and Myelin Project UK donation pages.

If you would like to do your own fund-raising activity on behalf of Tri4Joe then please let me know. The ELA and Myelin Project UK have respectively AiderDonner and JustGiving accounts which can be used to construct your own fund-raising page which we can then link to and blog about on Tri4Joe. Contact us if you need any help.

Apologies for the long unintended silence from us.  The months have whizzed by and we haven’t updated you on Joey’s progress in ages.  Life, thankfully, has been good to us in recent months.  Once Joseph was fully recovered from his gastrostomy operation in February, we decided that we should try and go away together for short breaks whenever we could – we went to Paris in March for the ELA medical research meeting, then Ireland in April for my father’s 70th birthday party and we’ve had a few weekends away to touristy places in France with family and friends (Ardeche, Cap d’Agde, Auvergne).

Joseph has made lots of progress over the past few months; he’s had his first pony ride, his first back seat bike ride and he’s received his first trotter after getting the green light from his orthopaedic doctor – this has opened up a whole new world of exploration and discovery for him.  His level of body tone has improved, he’s holding his head very well and he can now, most of the time, turn spontaneously from side to side when lying down. On the not so positive side, he will need to start wearing glasses again as he has been increasingly twisting his eyes inwards, so we collect his new set of specs next week.

Joseph has had a busy few months with his weekly sessions of psycho-motor, physio, speech therapy and eye exercises and other various consultations with the neurologist, paediatrician and orthopaedic doctor. He has also added an occupational therapy session to his list of weekly exploits – the therapist has started exploring his ability to understand ’cause and effect’ by the use of a ‘switch’ or large contact button that activates toys when pressed.  He’s doing very well with this and is now trying to frantically press every item we put in front of him to see if it will come to life!  Adding something like these ‘inclusive technology switches’ to Joseph’s life will be great and may well reduce the amount of times we get screeched at to keep pressing the start button on a toy!

A few friends have recently asked us whether Joseph is talking yet or eating solids or feeding himself.  Globally speaking, nothing has really changed in terms of Joseph doing anything by himself like sitting up, crawling, standing, walking, talking, feeding etc. He still has very little motor control, for example, while he can grab something in front of him now (like my prize rose outside the front door), he will very rarely be able to do anything with the object he has picked up other than drop it again.  He can’t put it into his mouth or pass it from one hand to the other or hand it to someone.  Sometimes there are glimmers of improvement so we will keep stimulating him and hoping.

Joseph’s level of interest in his surroundings has improved and he is increasingly using his eyes and expressions to charm those around him, especially the ladies!  He is growing taller (84cm) and putting on weight (12kg), while both Matt’s and my biceps are getting bigger from lifting him. Despite Joseph’s global physical challenges, his determination and magical character never cease to amaze us and fill us with joy.

Fund-raising for the ELA and the Myelin Project UK continues.  As you know, we’ve had the Epic4Joe mountain bike adventure race in South Africa during March and the ELA football tournament here in Grenoble at the end of May, raising more than 2,600 GBP for the Myelin Project UK and 1,900 euros for the ELA respectively.  At the football tournament Joseph did the ‘fictive kick off’ for the final match and also had a trophy named after him, called: ‘The Joseph Swift Fair Play Cup’.   The transition year students of Mount Mercy College Cork in Ireland, raised 500 euros for the ELA in April with a two night musical called ‘Razzle Dazzle’, led by their Director; Mary Mulcahy and we’ve just heard and are extremely grateful that MMC would like to make this an annual fund-raising event for the ELA.  Joseph and I visited the girls when we were in Ireland and we spoke to the them about leukodystrophy and the ELA. Finally, Maria Dickenson recently ran in the 10km Dublin Women’s Mini Marathon and raised 951 GBP for the Myelin Project UK.  Thanks so much again to everyone for your continuing support.

Here are a few photos to summarise some of what’s been going on over the past few months: