General

Well done Uncle John and team

Posted by on June 1, 2015 at 3:18 pm

We’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! […]

Mixed emotions in Paris

Posted by on April 1, 2015 at 10:31 pm

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. For some of the families that we have become friends with over the years, there’s always a few heartbreaking moments when […]

From the past week…

Posted by on March 23, 2015 at 10:22 pm

Joey 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 […]

Long time no update

Posted by on March 21, 2015 at 11:31 pm

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 […]

Remembering Grandad Jimmy

Posted by on April 18, 2013 at 2:16 pm

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 […]

Mets tes baskets et bats la maladie

Posted by on October 27, 2012 at 12:07 am

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 […]

Going downhill…

Posted by on October 22, 2012 at 4:46 pm

…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 […]

Bravo

Posted by on June 28, 2012 at 4:56 pm

Quelle réussit. Bravo les filles. Super well done and thank you! http://ela.alvarum.net/isabelleruin

Sophie Lynne Swift

Posted by on April 15, 2012 at 4:00 pm

2011 was an eventful year on a global scale, but it was also pretty eventful for us and, fortunately for us, in a very positive way. On December 14th Sophie Lynne Swift arrived into the World. She is now four months old and is developing well. Joseph was a little bit suspicious at first, but […]

Stealing hearts

Posted by on March 16, 2011 at 7:02 pm

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 […]