At www.info4carers.com , you’ll find a new book called You are Not Alone – A Carer’s Journey written by Michelle Rhodes and Tanya Dennis, two Mums of special needs children.
Tanya writes: “In mid 2002, our son Jaden Dennis-Marler was born at Westmead Hospital in Sydney. His birth was a natural one without any complications after a labour of six hours.
At Day 23, he suffered his first serious seizure, turning an awful colour of blue. We raced him to Westmead Children’s Hospital in an ambulance. After a week or so we returned home on medication. However, this pattern of seizure, ambulance and hospital was to repeat itself for may years to come.
We’d had all the normal prenatal screening tests done and they had shown no problems. Like everyone that begins this journey, we were completely naive to the world of hospital and disability.
It wasn’t until six months of age that we finally received a diagnosis of 1p36 Deletion Syndrome. This is a chromosomal disorder caused by the deletion of a band of DNA along the short arm of chromosome 1. Chromosome 1 is the largest human chromosome and represents about 8 percent of the total DNA in human cells. The “p” refers to the “petite” (short) arm of the chromosome. “36” stands for the location of the deletion along the chromosome. It is estimated that the syndrome occurs in one of every 5,000 to 10,000 births.
Confused? So were we. The numbers, letters and medical terms seemed tumble out of the Doctor’s mouth so fast. What it meant though, was that Jaden would be unable to feed himself, walk, or talk. He’d need constant care and medical attention for the rest of his life. So I became a carer, I never took up full time employment again.
After a while of wrestling with the disability system in NSW, we eventually moved to Queensland where we had more family and where we found a wealth of services to access.