On the 19th August 2017 we kicked off our third family meet-up and first organised weekend event, with a family day at the Cricket Green School. A big thank you to headteacher Mrs. Celia Dawson and everyone at Cricket Green School for the use of such a lovely school and grounds.
The hard work and planning that our event organisers Stephanie Barnes and Barry McGiir had put in, with the help of their team of volunteers, was evident the second we walked through the door. The decorations were a homage to Zellweger UK with green and purple giving everyone a warm and cheerful welcome.
During the welcome session, while our very own Sarah gave an update on the work we’ve been doing over the last year, we were joined by The 501st UK Garrison.
Little did we expect the show they put on and the friends they were to become with our children. We couldn’t have asked for better entertainment for the children, parents and volunteers alike.
We were very lucky to have two of our scientists back to do fabulous presentations on the research work they have been doing behind the scenes into the peroxisome. Thank you so much to Dr. Ewald Hettema and Dr. Michael Schrader for such entertaining and informative presentations… every year I personally feel that bit more clued in on the peroxisome and it’s huge significance, not only in the world of Zellweger Spectrum Disorder but many conditions, thanks to your wonderful talks.
In the mean time our team of carers with the help of Darth Vader, Officer Billups, a snowtrooper and some stormtroopers, entertained our children. We can’t thank you enough, Helen, Beth, Kayleigh, Ryan and Rhyce.
All while Steph, Barry and their team of volunteers made up of close friends and family. A huge thank you to Steph, Barry, Steph’s Dad Steve for the monumental task of preparing all the food (we were very well fed!) and to Steph’s mum, sister and son – Lisa, Kelly and Rhyce, and also to Nikki, Kerry, Dora, Ginny, Maisy, Leah and Kacey for running around to make things run so smoothly!
Over lunch our metabolics specialist Dr. Germaine Pierre kindly gave an incredible presentation on Peroxisome Biogenesis Disorders and the Zellweger Spectrum. As a veteran parent of nearly 20 years who tends to think parents somewhat the specialists; I have to say I learnt something new and gained greater knowledge of this condition. How lucky we are to have been able to welcome such a knowledgeable and kind specialist to the day. Thank you so much Germaine.
After lunch we had a bereavement session and a mingling session running concurrently. Both informal and just a chance to share experiences and gain knowledge and support from the few people who really understand the journey each other has taken.
We ended the day with an emotional balloon release in memory of our lost children, went inside for some BBQ food, and then convened back at the hotel so that families could wrap up an incredible day and socialise at the hotel bar.
We all got together again the next day for a walk, a visit to Dean City Farm and then a picnic at Morden Hall Park.
I don’t think anyone wanted to leave at the end of the weekend, and I think I can speak for pretty much all our families when I say we can’t wait for the next one.
Our sincere thanks to Genetic Disorders UK for supporting our day.