Montanna at the Melbourne Royal Childrens Hospital (April 2005)Picture by Shazz Brownlaw.
News Article 2
Making every moment count.
Reprinted from The Standard.
By JULIE McNAMARA - March 4, 2005
A RARE genetic disorder means Montanna Brownlaw probably won't live to see her first birthday.
When a blood test in November found the seven-month-old Heywood baby had Spinal Muscular Atrophy (SMA) type 1 her parents said doctors basically told them to go home and prepare for her funeral.
There is no known cure for the disease and little Montanna is believed to be the only person in Victoria with it at the moment.
Montanna has the most severe form of the disease which destroys the nerves controlling voluntary muscle movement, meaning messages aren't sent from her spinal cord to her muscles.
Her mother, Julie Cini, said the condition meant she was far more susceptible to respiratory complaints and was no longer able to breathe without the aid of oxygen.
Ms Cini said Montanna had spent the past 10 days in Warrnambool's South West Healthcare hospital after contracting pneumonia and that they had expected her to die three different times in one day last week.
She said she and Montanna's father, Ross Brownlaw, had slept in the hospital room by her cot every night, eager to spend every minute with her.
Ms Cini said she became concerned that there was something wrong with her first child when she realised that other babies in her mothers' group at Portland were lifting their heads and raising their arms while Montanna lay limp.
A local doctor referred her to the Royal Children's Hospital where a simple blood test detected the disease which Ms Cini said had been very difficult to take.
"It's extremely hard. Ross and I talk about it all the time," Ms Cini said. "We had hopes and dreams for her. We won't see her crawl, walk, her first day of school, her 21st birthday."
She said the pair were keen to get her home to Heywood so her older sister Billie, 11, could spend time with her and that she wouldn't have to spend her final months in hospital.
Doctors have told the couple that there is a one-in-four chance that any other children they have will also suffer the disease.
Ms Cini said the staff at both the Royal Children's Hospital and South West Healthcare had been wonderful and encouraged everyone to give generously to RCH's Good Friday Appeal.
She said she could never imagine what it was like to have a sick child before Montanna was born and that the RCH needed the funds to conduct research into cures.
Mr Brownlaw said the couple had been overwhelmed by the support they had received from the community and said the Kiwanis Club of Warrnambool had even donated a highchair for Montanna.
The pair recently established a web page about the disease to enable other sufferers and their families to communicate because they were struck by how isolated they felt when Montanna was diagnosed.