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Wow Moments


Amongst the daily round of appointments and treatments its nice to hear about moments when something wonderful happens, we call these 'wow moments'. When someone does something they thought they couldn't do or experiences something amazing. If you have something that you think you would like to add here just get in touch using the contact form here.

Harry's youTube channel

Harry Trewartha has decided that he has something to say. So he has started a youTube channel where he will talk about what it is like for him to be growing up with Kabuki Syndrome. 

Charlie is a mascot for Harlow Town FC

Here is Charlie Adams with his beloved Harlow Town FC. Charlie was mascot for Harlow Town Football Club and had two surprises, he was presented with a coat and a signed photo of all the HTFC players and manager for being a brave boy after all his operations and a write up in the programme. Thats one ‎happy‬ boy and a proud Mum and Dad.

Bukky has gone to Uni!

The City and University of Derby may not know what they have let themselves in for! Bubbly, fun and determined Essex boy Bukky Owoaje has started his Joint Honours degree in Film & Television studies with American studies. Bukky says "It's going well, I've made a bunch of friends. Also I'm getting plenty of support with my work I have a mentor, note taker and a support worker. It's been a blast so far." 


Great news Bukky!

Ben's Graduation

Ben graduated with a Foundation degree in computing on 31st October 2014. He is now doing the BSc course in computing at Glyndwr University Wrexham! Very proud moment!

Lucas Meets McBusted

Here is Lucas Ormrod meeting Harry from McBusted.


Lucas's Mum Emma says "Lucas was at Keech Hospice and the children's unit was being opened by Harry. Harry talked to some parents one of them was me and I managed to slip in a little information about Kabuki Syndrome, of course he had a cuddle with Lucas falling in love with him."

Something Special

Here is Scarlett Barrett using her expert Makaton skills on Something Special. You can watch the whole episode on the BBC iPlayer here

Mr Tumble

Antoni Tarnawska met Mr Tumble! Thank you Justin Fletcher! You are doing a great job with children. Thank you Make-a-Wish for making this happen. Antoni's Mum Kasia writes a blog on Antoni's journey with Kabuki, you can read the entry on his day with Mr Tumble here



Parachute Jump

Imi Dickinson "Thank you sky dive GB for the best ever feeling of my life"


Olympic Torch

Jenny Anderson "In 2012 I was given the privilege of carrying the Olympic Flame through a town about an hour away from where I live on June the 14th. This was an extremely magical day and an experience I never want to forget. I got nominated via my Mum for all the Voluntary Work I have done in my area. Rainbows – Young Leader, Primary Schools, Nurseries, Playgroup, Youth Group and even Borders Youth Theatre as well as WRVS, Hospital Radio and a local radio programme for young people. I had to be up at 5:30 in the Morning to get ready for my Moment to Shine however it was well worth it. I was rather emotional on the day of me carrying the torch as I was still rather shocked that little old me had been chosen to carry it and also how quick the day had come around for me to carry the torch. It was so fast and it left me wanting more and being able to relive the experience again."


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