This is the story of a child’s first ten years of a life he was not supposed to have. Born with severe FASD, he has suffered cranio-facial deformities, respiratory problems, cardiac problems, brain damage and more.
It is also my story: of my relationship with this child, as his foster mother and advocate; and my battle to keep him alive despite the odds. More
“Mending Matthew” is the story of a child’s first ten years of life, ten years he was not supposed to have. Born with severe Foetal Alcohol Spectrum Disorder, he has suffered major cranio-facial deformities, a defective airway, respiratory problems, cardiac problems, renal issues, and significant brain damage.
It is also my story: of my relationship with this child, as his foster mother, then as his guardian and advocate; my ongoing battle to keep him alive despite the medical odds, and the multiple barriers and failures within the systems meant to support him; all against the background of my own disability.
Matthew’s short life has encompassed more pain, tragedy, triumph and humour than most people experience in a lifetime. As well as multiple major surgeries and hospitalisations, he has achieved many things deemed impossible by the experts.
The story is also a warning to the community as a whole, doctors, other professionals, and particularly pregnant women, of the risks and responsibilities of alcohol consumption during pregnancy: Australia lags well behind other developed countries in its recognition, research, and attitudes towards Foetal Alcohol Spectrum Disorder. In the current debate around the alleged over-diagnosis of ADHD and Autistic Spectrum Disorders, FASD deserves a prominent place.
There is little hope for Matthew, and children like him, until the Australian community accepts responsibility for the challenges associated with their lives.