We are regularly told that these stories give people great hope when they have just received a Kabuki Diagnosis. Therefore we are always looking for more stories to add to this page. If you would like to write yours please get in touch using the form here
Amongst the daily round of appointments and treatments its nice to hear about moments when something wonderful happens. When someone does something they thought they couldn't do or experiences something amazing. You can see some here
"We feel blessed to have our Harry having got so close to losing him. We hope that despite his challenges and with the right love and support Harry will grow up into a happy, caring, fun-loving man."
"Being in touch with other Kabuki families has made such a huge difference to our lives. We think the children are all absolutely beautiful and love to see all their various achievements."
Some of our members have been kind enough to write their families story. We hope that these accounts of peoples journeys with Kabuki Syndrome show that there is more to them than their diagnosis.