It is estimated that just one baby in every 3000 is born with a disorder of the middle part of the brain (corpus callosum) however incredibly two of Kristina Coburn’s three boys have the condition.
The corpus callosum has more than 200 million nerve fibres making it the largest wiring pathway in the brain, transmitting information between the left and right hemispheres. In some babies the corpus callosum is completely missing or only partially formed.
The result is a disorder of the corpus callosum and the impact on sufferers can be complex and random; some will have few disabilities and incredibly some even go their whole lives not knowing they have it, while others will have a very high level of disability; unable to walk or feed themselves.
In Kristina’s eldest son Connor, aged 17, the disorder manifests as an intellectual disability, epilepsy, autistic tendencies and some physical limitations. Youngest son Kyle (9) has an intellectual disability.
Kristina said she knew little about the disorder when her boys were diagnosed. Eager to know more, she contacted the mother of a child she read about in the local paper who similarly had a disorder of the corpus callosum.
The two mums became Facebook friends in 2010 creating the foundation of the Australian Disorders of the Corpus Callosum (AusDoCC) Facebook support group which surpassed 340 members in April 2016.
It also gave rise to the AusDoCC organisation which has grown to be the nation’s leading advocacy and support group for people with a disorder of the corpus callosum and has forged strong bonds with Australia’s top researchers in the field at the Queensland’s Brain Institute (QBI).
AusDoCC’s first national conference in 2015 attracted delegates from around the world and paved the way for Australia’s inclusion in the International Research Consortium for the Corpus Callosum and Cerebral Connectivity (IRC5).
Kristina said she couldn’t be prouder to have started it all.
Kristina said before the national Facebook page she felt alone a lot of the time.
“People didn’t understand ACC and I had to try and explain it all the time,” she said.
“But in the group they just know and I’ve made connections online that I’d never have made otherwise.
“We are there to support each other when things get tough and to share information.
“I feel really proud that I’ve bought all these other people right across Australia together too.”
In May 2017 AusDocc will host its second Australian conference. It will be run in conjunction with the International Research Consortium for the Corpus Callosum and Cerebral Connectivity (IRC5) made up of leading scientists in the field worldwide.
Contact AusDoCC at info@ausdocc.org.au
For more information about the corpus callosum research being conducted at Brain Institute at University of Queensland contact Kirsten MacGregor, Executive Communications manager on 07 33466416 or 0448108441 or k.macgregor@uq.edu.au