Ohtahara Syndrome Support Group

This website is dedicated to the families, carers and friends of Children with Ohtahara Syndrome. Its main aim is to provide information and support to those caring for OS children as well as to those who may have lost children to this severe neurological disorder.

This website is born from the Ohtahara Syndrome Yahoo! Group, which has provided a support community for many OS families since July 2000. Started and still hosted by Tamie Horak, it is the only international group of its kind and currently has over 150 members through whom even more OS cases and local support groups are known about. If you are caring for a child who has recently been diagnosed with OS, and you would like to communicate with other families please consider joining our self-support group.

There is very little known about this illness, but some of what is known can be found through the links we have provided. However all the families on this support group recognise the immeasurable value of being able to actually communicate and share with other families going through similar experiences. By talking not only can we pass on information relating to diagnoses, tests, treatments and medications but we can share our emotions providing comfort, support, strength and love at the times we most need them.

"Our greatest wish for this site, is that no family will ever again have to face this syndrome alone. We are here to welcome you, bring encouragement, educate and give you a place where you can, perhaps, find answers, understanding, a sense of family, strength and peace". Tamie

Website created & designed by David Turner

Photos by Mary Turner