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 - Connecting families
Who is Supporting Aussie Kids with Kabuki Syndrome?
We are a registered not for profit charity who support families/caregivers who have a child with Kabuki Syndrome.
We offer information, external links to genetics departments and research as well as links to medical information. A stories page with personal accounts describing many of the challenges of coping with a child that has Kabuki Syndrome.
We also display members photographs, facilitate contact with other parents, sibling information, early Intervention and educational links... and of course - support.
We host 3 day retreats, educational seminars and family days for families who have a child with Kabuki Syndrome.
Membership for family members including siblings and membership for professionals to aide in information sharing.
SAKKS currently has over two hundred members from every corner of the globe.
Our Key Objectives:
- To celebrate the achievements of all children and adults with Kabuki Syndrome
- To support families/caregivers by offering information, friendship and contact with other families
- To provide information to the public; raise awareness
- To provide information to the educational and medical sectors to increase awareness and aide in earlier diagnosis
- To support the siblings of children with KS giving an opportunity to talk with other siblings in similar situations
REMEMBER you are not alone.
Thankyou for visiting www.sakks.org