SMA Australia - Your Stories - Montanna Brownlaw-Obituary

In her first few days people commented on how quiet and peaceful she was, and that she seldom ever complained. As Montanna grew it was thought that she was a slow developer due to her lack of movement.

However, at the age of three and a half months old, Montanna was diagnosed with a rare genetic condition called Spinal Muscular Atrophy (SMA) type 1, the most severe form of the tragic disease.

It was only the second case that the Peadiatrician had seen in 20 years, with one in every 10,000 children born withone of the four types of SMA.

Spinal Muscular Atrophy is the number one genetic killer of children under the age of two. SMA is a genetic motor neurone disease that causes the progressive detoriation of motor neurons in the spinal cord.

This results in the weakening and wasting of the body's voluntary muscles,with severity usually determined by age of onset.

Ross and Julie were told that their daughter would not live to enjoy her first birthday, would not be able to sit unaided, and would suffer severe problems with breathing and swallowing.

Montanna overcame death on numerous occasion, including in February and March when she was hospitalised in Warrnambool with pneumonia. Because of a eak cough mechanism, Montanna was susceptible to respiritory complications, with docotr's expecting a bout of pneumonia to claim her life. But she defied the odds and returned home to Heywood within 10 days, amazing both her parents and the medical staff.

With no known cure for the disease Julie and Ross were determined to prove the medical profession wrong after being told: "There is nothing you can do. Just go home and enjoy the time you have left". With a comprehensive internet search, they found treatment options that were being used in different countries, and went about challenging doctors with what they found

Montanna began to be supported by a portable suction machine, which enabled her to breathe more effectively by incerasing the amount of oxygen into her body, and she used a nasal gastric tube to feed after she started to loose the capacity to breastfeed.

Ross and Juliereceived the news they had been looking for in April- Montanna would use a breathing machine called"Bi-Pap", which would help manage her respitory problems.

One of Montanna's greatest legacies was to influence the attitudes of the Australian medical profession about treatment options for SMA children, with Montanna far out living the normal expectations of someone with the severity of the disease.

Everyone who knew Montanna wished that she would get to her first birthday, and she nearly made it, but it was not meant to be. She passed away peacefully on Saturday, June 25 at the Warrnambool Hospital, in the loving care of her parents and staff.

During her short 10 months Montanna brought so much joy, happiness and love to everyone who laid eyes on her. With her hearing, vision and intelligence not impeded by the SMA, Montanna was bright, alert, social and continually smiling. She was at her best with Ross, Julie and big sister Billie, who Montanna adored, beaming everytime she would walk into the room.

Montanna was continually talking to her 'friends' Clive, Sheepy Face, Elmo and her toothbrush, that she held on to until the very end. She was more concerned to be with those she loved than being concerned by what was eventually claim her life.

Montanna inspired her parents to create the Spinal Muscular Atrophy Australia website, which is dedicated to providing support to the families of those suffering from the rare devestating disease.

They established an Online Conference room, so families across the country and globe could offer support and information on possible treatments and care options. Julie and Ross have also created a foundation, which can support individuals with expensive equipment needs, and to contribute to research on treatments and possible cures.

With SMA Awareness month taking place in the United States in August, Julie will be launching the website nationally through the Royal Childrens Hospital in Melbourne.

Ross and Julie were often asked how they kept up the 24 hour around the clock care up, and their reply was always; "for the little bit we do, Montanna gives back far more". Although the family is devestated, they believe that Montanna is now in a much better place, and she had been sent to them for a short while to teach them that it's not how long you live for, but how you live your life.Through her life much was learnt, that will help all of those that follow her, in both the general and medical community.

Ross, Julie and Billie would like to thank the greater Heywood and Portland community for their ongoing support and love, including the hundreds of cards and messages from well wishers that were touched by Montanna's life. If anyone would like to know more about Montanna, the disease or donate money to the SMA Australia Foundation to help support families affected by SMA, visit the web site at www.smaaustralia.com

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Montanna's Obituary!

By Shane Fowles