Website a legacy to baby Montanna

By Rebecca Fraser
OUT of one family’s personal tragedy has come a story of courage and goodwill as they try to help others deal with a rare disease.
In June, Berwick resident Tim Brownlaw’s 10monthold niece lost her battle with spinal muscular atrophy (SMA), a genetic motor neuron disease that causes the progressive deterioration of motor neurons in the spinal cord.
This results in weakness and wasting of the voluntary muscles (atrophy) and although SMA does occur in adults it is the number one genetic killer of children aged two years and under.
Mr Brownlaw said his brother, Ross, and partner Julie Cini who live in Heywood in Victorian’s Western District, had been devastated by the diagnosis and the loss of their little Montanna Jean.
But during the heartbreak, the family set up a website to help people deal with the disease and ensure that Montanna’s legacy lives on and benefits future SMA sufferers.
Mr Brownlaw, a parttime web designer, created the Spinal Muscular Atrophy Australia website earlier this year after Montanna was diagnosed with the disease.
“When Montana was diagnosed, the family was left out in the lurch and there was nowhere in Australia to get information and support and they had to go to sites in the United States and other countries,” he said.
“Through this they realised there was a real need for something for people here in Australia.”
The website aims to provide a support network and information to all SMA sufferers and their families in Australia and has a community conference room that is open to all.
Mr Brownlaw and his wife, Sharon, have two sons.
He said Montanna was a beautiful and bright baby with very dedicated parents.
“Towards the end she required full time 24 hour care. If you looked at her you could not pick it as she was bright and alert and loved attention.
“We all have our Montanna days but she will continue to live on through this website and will continue to help others,” Mr Brownlaw said.
Montanna was diagnosed with SMA Type 1, the most severe form of the disease and her parents were told there was no treatment or cure and to take their daughter home and spend as much time with her until she died.
Ms Cini, 31, said they planned to have more children in the future but faced a oneinfour chance of having another baby with SMA.
She said the couple would cross this hurdle when they came to it and at the moment they were busy working on the website and organisation.
Following the launch of the website in February, the family decided in August to delve further into the world of SMA and the Spinal Muscular Atrophy Association of Australia was officially formed, with the aid of other affected families and individuals touched by this disease.
For more information on the Spinal Muscular Atrophy Association of Australia contact Julie Cini on 0407 091 857 or go to http://www.smaaustralia.com