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"Megan has come on in leaps and bounds over the years. She loves it when all the family are together and enjoys our family holidays each year "

"I was diagnosed with kabuki when I was a baby so I was in and out of hospital as a child now that I am 21 I am in my final college year hoping to go to university in September"

Your Story....

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."

"I cannot begin to describe how much I rely on my “Kabuki Family” Without being able to speak to them, I don’t know what I would have done."

"We do not know what life holds for Charlie, but we can say for certain that there is not a boy in the world who is more loved and appreciated – just how he is."

"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."

"He is a wonderful inspirational young man who is loved by everyone he meets. The first nine months were tough but the rewards have all been well worth every second."

"It is a great help to finally find other families in our situation. Kabuki UK has given us not only information but also support and most importantly ‘hope’."

"We were told during my 12 week scan that I was expecting twins. Well that was just the beginning....."


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.

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