The Human Spirit

Recently I was drawn to two articles in the media and in particular the first which featured on ABC Australian Story this month ‘Cracking The Code’: http://www.abc.net.au/austory/specials/crackingthecode/default.htm.

Stephen and Sally Damiani’s first born baby son Massimo had a type of Leukodystrophy, the only problem was this was an uncategorised form, and most cases are genetic. This lead the father Stephen on a pain-staking long journey to delve further into human genomes, and to map his genome and his wife’s. With the help of a Genetic Scientist here in Australia, after four very long years this lead to a most remarkable discovery.

This story is a case of a father’s undying love for his son, his wife and his quest to find answers, a diagnosis and potential treatment for his son and other children. An amazing breakthrough which may just change how people are treated for many other types of diseases in the future.

For more information go to Mission Massimo Foundation

http://www.missionmassimo.com/

Australian Leukodystrophy Support Group Melbourne

http://alds.org.au

‘4 in 3’ The Mason Minniss Fund

https://www.facebook.com/4in3theMasonMinnissFund

The next story hits home in a big way, especially when it is a disease that claimed your child’s life!

Evander was just one day old when he was diagnosed with Neuroblastoma. Six months of Chemotherapy shrank the tumour, but there was damage to his spinal cord, now Evander is likely to be a paraplegic. His family have set up a fund to allow donations to continue to provide equipment and therapies for Evander and other children. His family are continuing other forms of intensive physiotherapy like ‘Locomotor Training’ as Evander also has a spinal cord injury but does not qualify for the government’s ‘Better Start Initiative.’

http://www.evanderconroyfoundation.org.au/

Both of these families highlight my catch phrase which is ‘ordinary people doing extraordinary things’. They have pushed the boundaries with their hope, spirit, courage and persistence as they continue their journeys to find better outcomes for their children.

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Book signing at Collins Booksellers Edwardstown

After a successful book launch two weeks ago, I have been overwhelmed with the positive feedback on my first book ‘Through A Mother’s Eyes’. My first book signing at http://www.collinsbooksellersedwardstown was also a great day. A nice crowd of people attended where 51 copies of my book were sold. I had set myself a target of selling 50 copies so that was amazing. Thank you to all my friends and family for your support, it means a lot!

I was approached by a lady whom had suffered a stillbirth many years ago, I would estimate she would be in her 50’s. Her daughter-in-law also suffered the same fate recently, and it is to these people I hope my story offers hope. We agreed that the pain is still there, and the grief in essence never leaves. It just slowly subsides, the easiest way to explain it is to liken it to the ocean. In the beginning it is quite fierce, as the waves pound and threaten to engulf you, and almost swallow you up! But as time goes on, it can also be a gentle rolling and rocking rhythm, as it almost seems to tease you, and lull you into a false sense of security. The storm may have passed but the remnants of the aftermath are still present.

Here are a few comments on my book so far:

I couldn’t put your book down! It is a beautifully written and presented book, that belongs on every bookshelf. You truly are inspirational! While no-one I know has been what you have been through, the way you have shared your thoughts and feelings so honestly and openly, I feel everyone can relate to it, on some level. You are an amazing lady!! xx
Thank you for this beautiful, sad and loving journey, your courage, strength and love is truly an inspiration to all and should be taken into everyday of our lives. You should be so proud of yourself as I am sure your two little angels in heaven are xxxx

sara