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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