Finding out that your child has Kabuki Syndrome may or may not be a surprise. Most of us know that the long or short list of problems is too much to be a coincidence. Sometimes the diagnosis can come after seeing many doctors, sometimes it takes but one. A diagnosis gives answer to the symptoms your child experiences, not the person your child is, or will become.

Some of us throw ourselves into research and support groups after learning about the diagnosis, and some of us quietly go about our lives - but all of us deal with the diagnosis very differently. Both parents will look at the diagnosis differently, as will relatives and friends.

Even though Kabuki Syndrome is a relatively new syndrome, Geneticists and Counsellors have heard of the Syndrome and can offer support, or help us find other support services.

General Practitioners  aren’t usually aware of Kabuki Syndrome, however they are always keen to learn more, as are other health care providers.

To help support those affected by Kabuki Syndrome, we, (Peta and Adrian), decided to start this website. We hope to offer comfort and support to other families just like ours.

SAKKS is the Australian home of Kabuki Syndrome, and offers information, external links to genetics departments and research as well as links to medical information, a forum and a stories page with personal accounts of the challenges of coping with a child that has Kabuki Syndrome. It also offers photographs, contact with other parents, membership, sibling information, early Intervention and educational links and of course - support.

There is a new page for KIDS ONLY. Membership to this is for children with KS and their siblings - a safe and moderated area for our kids to communicate with each other, and there are a few fun game links too.

SAKKS is only successful because of its members – and we say thank you to those who have become members and supplied stories and photographs.

REMEMBER you are not alone. Others have been there before you and will help catch you if you fall.

Thankyou for visiting www.sakks.org

THE SAKKS TEAM

Peta Colton - Founder / President / SA Rep.
Adrian Colton - Public Officer / Web Design
Stacey McKiernan - Treasurer / Fund Raising Co-ordinator/ VIC Rep.
Darrin McKiernan - Secretary
Jen Holdsworth - TAS Rep. / Board Member
Paul Holdsworth - Board Member
Melasande Carey - NSW Rep. / Board Member
Steve Carey - Board Member
Silvia Sangaletti Trawny - Newsletter Editor
Leanna Olberg - USA Rep. (West Coast)
Kristin Barek - USA Rep. (East Coast)