Nick Sharp
Ride Britain for Kabuki UK
Fundraising for Kabuki UK
Story
In a crazy moment back in October 2018 with beer number 3 about to be downed i was deep in conversation with my friend and work colleague Steve Anson who told me about his beautiful little daughter Emma who has a very rare genetic condition called Kabuki Syndrome.....15 minutes later and a few photos of Emma ( who is unbelievably sweet) and I had agreed to cycle 980 miles from Lands End to John O'Groats raising money for Kabuki UK - a charity that is very personal to Steve, his wife Kate and their family and friends.
It took me 5 more days to share the decision to undertake such a monumental feat with my lovely wife Penny ...who initially thought i was mad but is now doing the ride as well!
I am now fitter than for a long time, dont have weekends anymore due to training and holidays have all been on a bike!!
I please need your help to support an amazing charity and also to make all of the pain worthwile - none of the money we raise goes towards the event and is all going straight to the charity.
Why Kabuki UK?
5 years ago, Steve's youngest daughter was born. She had a cleft palate, dislocated hips, hypermobile joints and severe feeding issues. She spent much of the first six months of her life in hospital as further issues became apparent – issues with development, hearing, kidneys, heart and immune system.
Steve and his family went through an incredible journey over this period and it took nearly a year before she was diagnosed with Kabuki Syndrome - a very rare genetic condition - although this gave Steve and his family an 'answer' it also left them with many questions about the future - whether Emma would walk, talk or even be ablet to eat normally.
Kabuki UK was set up in 2012 by a group of Kabuki families and aims to support kabuki famililes directly as well as providing awareness adn training to the medical community.
The charity has been an incredible support to Steve and his family over the last 5 years and he wants to ensure that he now puts something back in and helps them continue to offer this vital support to other families.
I am happy to say that Emma is now healthy and happy – she can communicate, she can run around with friends and, in the last few months, she has learnt to eat – meaning that she no longer has a feeding tube.
Having decided to support Steve every pedal stroke of the way for this fantastic cause I would appreicate any support you can give.
Thank you.
Thanks for taking the time to visit my JustGiving page.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.