Well done Uncle John and team

imageWe’re sending a virtual big hug full of pride and thanks to my brother and Joey’s godfather and uncle, John, who completed his first marathon (Cork City Marathon, Ireland) today, Monday 1st June 2015, in a time of 3 hours 44 minutes, despite the gale force Irish winds, torrential rain and a pulled calf muscle! The fundraising target of 2015 euros has been smashed and money is still coming in (final update to follow soon). We are so proud and moved by all the organising, training and fundraising efforts that have gone on for the past few months, to raise awareness of ELA and Joey’s illness.

A big thank you to all the hard work and support from the relay teams: Aunty Dee, Madeline Foley, Rachel Hegarty, Tracey Keenan, Fionnula Byrne, Mark Savage, Paudie Dalton, Mickey O’Connell, Daniel Cronin, Colm O’Sullivan, Anna and Liam O’Driscoll, O’ConnerPyne team and anyone else I’ve left out accidently. Plus, all the half marathon runners: Conor Pyne, Sinead Pyne, Pauline Mitchell, Mark Pyne, Niamh Pyne, Tim Cronin, Denis O’Brien, Gerry Fitzgerald, Ciaran Mcnally and the many others who didn’t get to run on race day due to injury and also a special thanks for the patient partners, families, grandparents and friends who supported, helped, donated, fundraised, encouraged and who were always available to help out and give support.


Efforts like these give us incredible support and hope. Such solidarity will one day end the suffering of so many children and adults who have one form or other of leukodystrophy.

Our deepest and heartfelt thanks to you all.

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Mixed emotions in Paris

As always, the annual ELA family get-together in Paris on 27, 28 and 29 March 2015, combined with the AGM and medical researchers meeting on the different leukodystrophies sent our emotions in all directions.

Joseph Paris ELA 2015For some of the families that we have become friends with over the years, there’s always a few heartbreaking moments when we reunite with those who have lost a child since we last met 12 months previous. There’s so little that can be said that can make any difference. We can only embrace and cry.

Then there’s the jarring contrast of emotions when Matt and I sat in the medical researchers meeting where we both felt a re-ignition of hope, a feeling that we thought had long been extinquished.

We were given details of the first ever medical trial that may be able to treat Joseph’s illness; Aicardi Goutieres Syndrome (AGS). This trial will be held in either late summer or early autumn. We listened intently, we asked lots of questions and we came away from the weekend feeling a mix of excitement, fear, anxiety, hope, admiration for ELA for their funding (and every person who has ever donated to ELA) and awe for the incredible work of Professor Yanick Crow who has tirelessly worked on AGS over the past 18 years and who will be leading the trial at the Necker Clinic in Paris, the first paediatric hospital in the world.

This is more than we could ever have imagined or dreamed of when we started fundraising for ELA in 2008. This is such a major step forward for the future of AGS. A door of possibility has been opened, one that must stay open until we can finally close the door on this horrible illness.

We’ll be putting Joseph forward for the trial but he has to meet certain criteria before being accepted. Once we have all the details formalised we’ll give a more in-depth account of the clinical trial.

During the weekend, Professor Crow chatted and played with Sophie – another emotion thrown into the mix, one of gratitude and respect. It is thanks to the work of Professor Crow that Sophie exists.

Just as we were about to leave the hotel I turned and looked at Joseph as he rested his head on an ELA balloon, in French written on the balloon was: ‘ELA Espoir est la’ (ELA, hope is there). It certainly is.

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From the past week…

Joseph Tignes ELA 2015Joey had a busy week, from a birthday party for his friend Alice to handi-skiing in Tignes and meeting some ELA supporters such as the 2013 Women’s Wimbledon Champion; Marion Bartoli, a French TV comedian; Titoff and the Olympic Silver Medalist in the Ski Half-pipe; Marie Martinod. The ski resort in Tignes invited 3 families from ELA to spend the week at the ski resort and they also hosted the ‘Air Ladies‘ half-pipe skiing competition, organised by the Olympic champion Marie Martinod.

12 top athletes from around the world competed at this event and they delighted the audience with their stunts and jumps! 15,000 euros was raised for ELA. Joey had 3 mornings skiing on a special seat with skiis. We have never seen Joe smile and squeal so much. The wonderful ski guide, Ludo, took Joey down the ‘half-pipe’ much to everyone’s delight!

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Long time no update

Wow, it’s been so long since we updated Joey’s blog, I don’t know where to begin. There never seems to be enough time or energy left at the end of each day to put fingers to the keyboard!

The main push in getting Joey’s blog started again is thanks to my brother John who is training hard to run in the Cork City Marathon on the 1st June 2015. John will be fundraising for ELA (European Leukodystrophy Association), our chosen charity with whom we have a very close relationship. We have had so much support over the years from ELA, via the events organised, through the families we’ve met and shared many experiences with and the dedicated team who tirelessly raise funds for medical research and also public awareness for this horrible illness.

I’ve been promising John for a few weeks now that I’d get my act together and set up a fundraising page for him and also put some up to date info and images on Joey’s blog. So, the next few posts is catch up time…

I’ll start with a link to John’s fundraising page.

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Mission accomplished

We made it!

Our team finished 5th (out of 13 female teams) and I pushed Joey in his wheelchair across the finish line with his arms in the air delighted with all the applause, cow bells clanging and crowds cheering. I completed my 15km leg in 1hr 48 minutes. It was an emotional day. Thank you to all our friends and family who have once again supported us and donated so generously. And a big thank you to Marinette, Anne-Claire, Isabelle and Marine for their endless energy, motivation, encouragement and support.  We’ve beaten our 2013 euros target on the fundraising website and payments are still coming in…….fantastic.

30_grand duc


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Ultra Trail for Joe and his ELA friends

Grand Duc girlsLast year I promised our lovely neighbour Isabelle that we would run together in the 2013 Grand Duc ultra trail of the Chartreuse mountain range and raise some money for ELA.

I’m sticking to my promise. On Sunday 30th June, we’ll be doing the team relay event: 5 women, four of us from the plateau where we live in St Hilaire du Touvet; Isabelle, Anne-Christine, Marine and I, and then Anne-Claire who lives in the valley. We’ll be doing a total of 80km of trail running, up and down the Chartreuse mountains, with me doing the last 15km leg and hopefully crossing the finish line with Joey in his wheelchair.

We’ve been training together in the snow, hail and rain and thankfully more recently in sunny and hot conditions. Together we’re doing this ultra-trail for Joey and his ELA friends, some of whom are very close to our hearts: Mael in Mont St Michel, Tristan in Paris, Marius in Lunel, John in Lyon, Margot in Bescancon, Laure in St Martin d’Abbat, Natacha in the Midi-Pyrenees, and our two ELA friends whom sadly died this year after their battle against leukodystrophy; Arnaud and little Marlon.  My dream is that one day in the future there will be a treatment and a cure for each of the 34 different types of leukodystrophy.  It’s a lengthy path of medical research and a costly journey but I believe that our continued efforts can one day make this dream a reality.  Since Joey’s diagnosis and during our 6 years as part of ELA we have seen some great medical progress for some of the leukodystrophies.  We want to see more progress and for all of them.

The fundraising started yesterday with a ‘cream-tea’ morning hosted by a great friend, Katrina, who is also Irish and we raised 130 euros from a morning of drinking tea and eating scones and strawberries. Nice training!

Our goal as a team is to raise a total of 2013 euros!

If you’d like to sponsor us, you can either donate direct to our fundraising page or, send a cheque made out to ‘Association ELA’ and send it to me at:

11 bis Chemin des Rieux, St Hilaire du Touvet, 38660, Isere, France

Thank you!

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Remembering Grandad Jimmy

Grandad and Joe no 2 August2011

Grandad Jimmy passed away on 31 December 2012 and today (18 April) is his birthday. Joey and Grandad had a very special bond; Joey would sit in Grandad’s arms and he would be very happy, cosy and extremely pleased to have Grandad all to himself, sometimes making his other cousins quite jealous! We miss you very much Grandad, Dad, Jimmy. You live on in our hearts.



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VIP Joey meets the French President

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 turned into a magical Christmas wonderland.  We arrived by train and then taken by bus with a police escort through Paris to the entrance of the presidential gates.  It felt like we had won a golden ticket for Willie Wonka’s Chocolate Factory! The colours, the lights, the sweets, even giant Oompa Loompa’s entertained the children, along with lots of singers, dancers, comedians and musicians.  Santa made a surprise visit too and he brought Joey an early Christmas present.

Magical moments like Saturday temporarily distract us from the daily reality of life with very ill children.  Some of Joey’s buddies who have more aggressive forms of leukodystrophy may not have another Christmas. We made the most of this exceptional day.  A day full of emotion for lots of reasons.

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Mets tes baskets et bats la maladie


This week has been the week of ‘put on your trainers and beat the illness’ throughout national schools in France. Supported by the minister for education, a week of educating the young about leukodystrophy and fundraising for ELA has been carried out in 850 schools, with 250,000 students taking part. The week started off with children completing a dictation, written by a French novelist, covering the daily battle of leukodystrophy. Joey was welcomed at Ecole Notre Dame in St Martin D’Uriage and he ran with the children (in his pushchair powered by his daddy). He was presented with dozens of drawings wishing him well. We were very moved by the spirit and enthusiasm of the teachers, parents and children.

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Going downhill…

…in a positive way! Joey and a few of his friends enjoyed a trial ride on a cimgo (quad bike steered and controlled by a pilote who stands at the back) yesterday at a nearby ski resort. Great fun! A definite ‘yes’ for a longer descent next time. A trial ride just wasn’t enough for our adrenaline junkie Joe. Thanks to ‘Handisport’ (Pierre, Francois and Claude) for making downhill biking a reality for Joe and his friends.


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