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.