Liam

For day TEN of our Advent Calendar, please meet the utterly gorgeous Liam.  Liam is the son of our head of fundraising team, Sarah and Stephen O’Connell. We can’t get enough of his little smile and we are honoured to know and work with his incredible family!

Matt

For day NINE of our Zellweger UK Advent Calendar, please allow me to introduce you to Matt!  Matt is on the very mild end of the spectrum! He’s a keen supporter of Zellweger UK and an all round incredible dude! He is unique in that he is one of the few children on the spectrum around the world able to introduce himself in his own words, so take it away Matt…                             I was born on 18th October 2004, surprisingly  I was a small baby weighing just 6lb 9oz. My medical history has been a roller-coaster since I was born to be fair. I was diagnosed as deaf and got my first pair of hearing aids at aged just 2.Soon after that just a few months before my 4th birthday I was diagnosed partially sighted and got my first pair of glasses. I was then diagnosed with autism in November 2016 (it will always be an appointment to remember).The diagnosis of Zellweger itself was in April 2017. Despite this I enjoy every day and try my best to live life to the full.I have also posted many photos on instagram with captions related to Zellweger as well as a lot of involvement with this amazing charity. Many thanks Matt Thomas

Ellie

For day EIGHT of our Advent Calendar, please meet the daughter of our amazing Treasure (and backbone to Zellweger UK!) This is the utterly beautiful smile of the utterly beautiful Ellie.                              Here you can see some footage of a really beautiful moment with Ellie. Notice the space blanket; something that was a firm favourite of Ellie’s. <3

Darby

For day 3 of our Christmas Countdown, please let us introduce you to the Adorable Darby! I’m Darby, aka Darbles, Darbleberry, Darblicious, Darby Wasabi and – for reasons known only to my parents – Boofi! I love small, vibrating toys, being swished with soft scarves, feeling the wind in my hair and – above all – WATER! For Christmas, I’d really like a large hydrotherapy pool, but for now I’m making do with very deep baths.  

Zellweger UK’s 2nd presentation at the University of Exeter

  On 26th November, 2018, I was kindly invited back by Professor Michael Schrader and the team at Schrader Lab to give a presentation about Zellweger UK and my son Cameron to their 73 students from the module “Cell Biology of Disease” at the University of Exeter.

Ali and Tash’s 27 mile – 3 County – 4 Peak Challenge

  Crossing counties in honour of Cam, for Zellweger UK and the children coping with the same degenerative childhood disease. On Saturday 21st July, 2018 I – alongside my very good (and extremely patient!) friend of a quarter of a century Ali – embarked on a 27 mile trek across 3 counties, up to the peaks and back down of four major hills in the South West, They say you learn something about yourself on these kinds of challenges… it turns out I’m a complete and utter coward! Over the course of the day I built up an extensive list of things I’m terrified of, starting with the already firmly established cows, to the more newly acquired ownerless dogs, getting lost, roads, cars… mopeds… hills!

Our 2018 ZUK Family Conference 

          The northern foothills of Dartmoor provided the stunning backdrop for the fourth annual Zellweger UK Family Conference on 6-8th July when 24 families came together for two sun-drenched days at the Manor House Hotel in Okehampton, Devon. 

2017 Family Weekend

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.

Zellweger UK Meet-Up 2016

Bringing our families together in Birmingham for a second time! In June 2016, we had our second ever UK family meet up, kindly organised again by Michelle and supported by our team here at Zellweger UK. It was a wonderful chance to catch up with some of our families from last year, and to meet some fantastic new families;