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:

In case you haven’t checked the Epic4Joe diary recently, you’ll be pleased to know that our heroes, Mark and Dave, are doing brilliantly – they have survived six days so far and have only got two more to go!

It’s been very tough going in energy sapping temperatures of 40C. I’m exhausted just reading their daily reports.

In addition, they have managed to raise over 2200GBP so far. Awesome!

We’re going away this weekend to the ELA annual convention in Paris. Hopefully I’ll be able to get internet access at the hotel in order to keep you all posted on Mark and Dave’s progress. I apologize in advance if everything goes quiet over the next couple of days – you can always monitor their progress on the Cape Epic website.

Just a very quick post to tell you all that Mark and Dave have completed the Cape Epic prologue in a great time and are in good shape for the rest of the race.

Mark has been sending me updates via email so he must have internet access. The race can’t be that hard if there’s internet access at each stage finish! I had images of them finishing exhausted and then having hunt down their own food while fighting off lions and other savage creatures – not fighting over network cables!

Since Mark’s updates make great reading (so far anyway – may be they’ll get shorter as he gets more tired?!), I am loathed to lose them amongst other blog posts. To that end, I have created a separate page where I have cut and pasted his messages word for word. You can access the page easily from the Epic4Joe Diary menu option at the top of the page. I will update this page every day as I receive Mark’s messages so make sure to come back regularly and take a look.

Tomorrow is the big day for Mark and Dave – they will take part in the first stage of the World’s toughest mountain bike race: The Cape Epic. We wish them the best of luck. They’re going to need it – this really is a challenge to end all challenges.

For those of you not familiar with this race, there is full coverage of the event on Cycling News. I learned an interesting bit of trivia there: the Cape Epic is categorized as a “Hors Categorie” event by the UCI (cycling’s World governing body). It is the only mountain bike event in the World to have this status which is the same status as the Tour de France! So, if you haven’t done so yet, go and sponsor them – they deserve it.

Come back to the blog over the next few days to see how they are getting on. Mark has promised to send me a status report each day if he a) has network coverage and b) is physically capable of typing an SMS!