CHAMPION Lakes youngster Andie McAuliffe (6) was diagnosed with a major part of her brain missing before she was even born and is one of just 4000 babies a year in the world who have a disorder of the corpus callosum (DCC).
It means the part of the brain, the corpus callosum, is missing.
Made up of about 200 million nerve fibres, the corpus callosum sends messages between the two hemispheres of the brain.
Researchers don’t know what causes DCC nor is the disorder widely known, even among medical specialists.
For Andie, it means she is vision impaired, has poor hearing, low muscle tone, suffers epilepsy, had a stroke at birth and one side of her body is smaller than the other, which will require surgery to correct in the future.
Despite her myriad medical issues associated with having a major part of her brain missing, she is not recognised as having a disability by WA’s Disability Services Commission.
Her mother Maja Palacios says until the age of three, Andie’s world was a constant round of specialist visits and even now, |she attends 11 specialist clinics |at Princess Margaret Hospital |for Children or Armadale Hospital.
“Andie basically has a Syndrome without a Name (SWAN),” Ms Palacios said.
“She doesn’t fit in the DSC ‘box’ and we have mostly self-funded therapy since she was discharged from the PMH early intervention program just before the age of three.
“The therapy that Andie has continued with is provided by us at home or a private providers and the continuation has been crucial in her current level of functioning.”
“There needs to be a change in the system to allow services for these complex undiagnosed children who don’t tick the required ‘box’ that is recognised by DSC and Medicare.”
Ms Palacios is a member of Australian Disorders of the Corpus Callosum, a 350-strong advocacy group for parents and adults with a disorder of the corpus callosum (DCC).
AusDocc joined international celebrations on July 2, the middle day of the year, as World Awareness Day for Disorders of the Corpus Callosum.
Queensland’s Brain Institute is a world leader in research around corpus callosum disorders.
The institute’s deputy director Professor Linda Richards said a disorder of the corpus callosum could result in minor levels of disability.
“Some people may not even know they have it,” she said. “For others it can be very severe and those people have difficulty performing basic tasks like eating or walking.”
An international consortium is being formed to improve |diagnosis and prognosis for |children from a very early |stage.
Member countries include Australia, France, Brazil and the US.
“Putting together this international consortium, which met for the first time in May, is incredibly exciting because it holds really amazing potential to accelerate the discoveries we can make and utilise the skills and experience of scientists doing different types of work around the world,” Prof Richards said.
After being contacted by Comment News, the DSC assigned an area co-ordinator to assess Andie at a local level.