Baby Montanna, pictured with parents Ross Brownlaw and Julie Cini, has a rare genetic disorder that has no known cure. Picture: LEANNE PICKETT

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The Heywood Herald

Montanna defies odds to be home for Easter.

By AMI HUMPAGE.

SEVEN AND A HALF month old Baby Montanna, who has the rare and incurable spinal muscular atrophy type 1, is defying the odds, recently surviving a bout of pneumonia.

Her parents, Ross Brownlaw and Julie Cini said they almost lost their little treasure a few weeks ago when she was hospitalised in Warnambool with pneumonia, but Montanna made an amazing recovery and arrived home on Monday.

Ross and Julie said their little girl had continued to amaze them and was doing extremely well at the moment.

"When she was diagnosed with SMA type 1 the doctors gave us no hope, they basically told us to take her home, plan the funeral and enjoy what time we had," Ross said.

A few weeks ago, when Montanna was diagnosed with pnuemonia, the family received more bad news with doctors saying they did not expect her to survive and, if she did, they expected her recovery would take months - but the little fighter defied the odds and was home within 10 days, amazing both her parents and doctors.

"Montanna is starting to develop her own idiosyncrasies, nodding her head, raising her eyebrows and smiling. She is just glowing and a beautiful little girl," Julie said.

She said, although Montanna's care is specialised around the clock and was a big effort, it was worth it to have her that little bit longer.

"You look into her eyes and she is just so beautiful you can't help but want to keep her."

The couple have now started a SMA website which has been up and running for the past 3 weeks.

Ross said the reason behind establishing the site was because when Montanna was diagnosed with SMA Type 1, they found it hard to find any information at all.

He said after some research he found there was nothing in Australia to help or support Julie and himself, so they decided to start something and create a network where people could share their stories and ideas.

"We are starting to get a lots of hits, and have made contact with a number of people around the world who understood what we are going through," Ross said.

Julie said the site was also a way of raising awareness about SMA because "SMA is the biggest killer of Australian children under two years old, but no one has ever heard of it.: The website offers people a chance to share their stories, offer well wishes, participate in live chat on Saturday nights, and to join in a forum.

Both Julie and Ross have also found hope in one contact from Queensland who has a five year old son with SMA type 1.

They are now meeting with doctors in Portland to discuss various treatment options used internationally which could help Montanna.

"If Montanna can raise awareness about SMA that could help someone in the futire then we feel we have done our part n the world, but as parents we will do anything and try everything to keep our little girl as long as we can," Julie said.

For more information about SMA type 1, Montanna, or to offer your support have a look at the website at www.smaaustralia.com