Last week was possibly one of the busiest weeks of my life! I went to the 1st World CDG Conference in Barcelona. I squeezed it in while starting a new job and inducting 150 new international pupils into my school. I can’t say that work was particularly impressed that I buggered off two days into the new term. But then I can’t say I cared what they thought.

Finnan comes first.

I decided to go on my own because the conference agenda ran from 8:00 AM to 8:00 PM over two days, and I really couldn’t see the benefit of lugging Finnan all the way there and back as the poor child has only just gotten used to living in the UK. Another plane trip may have terrified him. Also, I didn’t fancy having him stuck to me like a barnacle while I was trying to take notes on presentations.

Yes I took notes. I’m a swot.

So off I went.

To appease my superiors a little bit, I left quite late after a full working day. I had to take a detour through Munich, which doubled the journey time. But Lufthansa is quite a nice airline, so I wasn’t too bothered. And there was always duty free. I met one of the agents from Hong Kong in the airport. She is in the business of shipping new pupils to us in the UK. She said she had to look at me for a while to make sure it was really me. She said all white people looked the same to her.

Anyway, the next day I was on meet and greet duty at the conference.

I met a lovely couple from the states, and we started giving out name badges and welcome packs. The lovely Americans could speak Spanish too, which really helped the process of welcoming. In fact by the time Professor Jaeken had arrived I was so starstruck I had difficulty not wetting myself.

Professor Jaak Jaeken was the first doctor to diagnose the first two CDG twins.

Then the first two CDG twins arrived! Now in their 40s, they were rolled in in wheelchairs by their parents. I was in awe.

And so came 42 CDG families and 70 professionals working in CDG. It was a CDG roll call of fame. People I had only known through social networking were arriving in the flesh! Vanessa Ferreira, sister to a CDG sufferer, had certainly done a thorough job with her invites and organization.

After a morning of listening to many professionals talking about CDG in their countries came an afternoon of listening to families tell their stories. After this came a surprise for the CDG families.

This was a slide show of all the CDG patients with two photos each. One then, and one now.

Every parent had contributed two quotes- how they felt then and how they felt now.

Luckily I had several other CDG families to hold my hand through the slide show. Twenty minutes of emotional torture later and the slide show ended. Finishing with the song ‘Fix You’ by Coldplay.

I felt like someone had taken my brain out and kneaded it into a mush. My eyes leaked like broken taps.

There was much smoking of cigarettes after that.

By this time, I was finding it difficult to summon up any adjectives about the way I felt.

But I think this photo sums it up. Sometimes a picture speaks a thousand words. In this case, a million words, some of which haven’t been invented yet.

Two parents listening to Hudson Freeze (a CDG researcher in the US), talking about new developments in the world of CDG in his lab…

listening-to-hud

 

by Julia Boonnak