One In a Million

Back in October last year we were approached by Rare Voices Australia to be interviewed for The Advertiser here in Adelaide. Journalist Elisa Black came to our home and spoke to Tayla and myself about what is it like to be diagnosed and live with a rare disease. Tayla spoke candidly about what the last two years have been like, and gave the journalist an insight into life with a rare disease and rare genetic disorder. Statistics are approximately 1 in 1 million of the general population worldwide.

We have been told alone in Australia only a few children have been diagnosed with the same tumour and genetic disorder…I wish we had some more accurate statistics! Following our interview a photographer also from The Advertiser visited us a few days later and took some photos to run with the story.

Finally on Saturday (25th January)  in SA Weekend we and three other families had a chance to tell the general public about life and living with a rare disease. Let’s hope that the researchers, the health system, the public and the politicians can understand how under resourced and under funded rare diseases are.

We need to be better advocates for ourselves and educate and create awareness about these particular diseases, or else we face the very real consequence where our children as well as adults will die without life-saving treatment.

“Rare Voices Australia was formed in early 2012 as Australia’s National Rare Disease Alliance to promote health policy and a healthcare system that works for those with rare diseases. It is pushing for a National Rare Disease Plan, to provide clear national guidance on rare disease management and research, a coordinated response that can be delivered within existing resources, while helping promote research and diagnosis, treatment and care”.

“There are more than 7000 rare diseases and many have no formal title and are difficult to diagnose. People living with rare diseases can go years searching for an explanation for their symptoms. They begin to feel like hypochondriacs, that it is all in their head.”

Our story features below:

http://www.adelaidenow.com.au/lifestyle/against-the-odds/story-fnizi7vf-1226809636167?sv=9025cfa016eea741fbc7e51f74c485dc#.UuMXmMkDVJA.facebook

On the 21st and 22nd February in support of One In A Million – Australia’s Rare Disease Alliance www.gothetorrens.com.au will officially launch in Adelaide. Walk, jog or sprint the River Torrens Running Loop (4.2 km) in support of three charities FARA  The Unicorn Foundation and Captain Courageous Foundation.

Triple M will broadcast the event in the morning and ambassadors Richard Douglas from the Adelaide Crows and Angus Monfries from Port Power will be attending.

http://www.weekendnotes.com/go-the-torrens-sprint-jog-or-walk-fundraiser/

Rare Disease Day is 28th February and more on the events going on around the country can be found here:

https://www.facebook.com/RareDiseaseDayAustralia?fref=ts

Rare Voices Australia

http://www.rarevoices.org.au/

The Unicorn Foundation

http://www.unicornfoundation.org.au

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Turning 30

Erin is a mom, wife and avid writer and was diagnosed with Carney Triad at just 27 years of age. Here is her perspective on turning 30…

The Cancer Aspect

 

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A good friend of mine asked me what it felt like to turn 30. This is what I wrote:

30 Years…

Time is such a fickle thing. We rush around doing our daily routines often wishing there were more hours to the day. In the same breath, we wish the week would hurry up so that we can enjoy a weekend or get a paycheck all the sooner.  As children, we wish to be older to enjoy the adult things. As adults, we wish that we were yet children to enjoy the child-like things. So when I faced my 30th birthday – all but seven months ago – I looked back on past chapters of my life and pondered on what time has given me thus far.

I first made the mistake of comparing myself to friends that were also 30. At a glance, they seemed to have…

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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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Cody

Pregnancy and Infant Loss Awareness Day October 15th

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I fell pregnant during Luke’s treatment in 1998. It was a normal pregnancy, but having a sick son to deal with certainly kept me occupied.

It was during my second trimester, that things went pear-shaped. Luke was undergoing some tests at the hospital, when I mentioned to his nurses that I hadn’t felt any movement!

They sent me off for an ultrasound and I was shocked by the news. Our baby had no heart beat…I had suffered a stillbirth at 26 weeks gestation.

Unfortunately I needed to be induced so that I could go through labour and deliver the baby.

My obstetrician was able to induce me at the hospital and some hours later on 02/09/1998…Cody Alan came into and subsequently left this earth.

There was no fanfare, just alot of sadness and grief that out little son never had the opportunity to open his eyes and meet us. Nor…

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Fundraising for a Cause

This Sunday my daughter Tayla and I, along with a dear old friend and her hubby and kids will join us for our second

Sunday Mail City to Bay Fun Run. Last year Team Spirit raised $1400.00 for the Women’s and Children’s Hospital Foundation.

This year our goal is $2000.00 and we are slowly reaching our target.

The funds raised will aid the Paediatric Palliative care Service and help with their ongoing projects in supporting children with life-limiting illness.

If you would like to donate to our cause here is the link: https://city-bay2013.everydayhero.com/au/team-spirit

Last weekend an article featured in the Sunday Mail here is the link to that story as well: http://www.news.com.au/national-news/south-australia/adelaide-mother-jackie-barreau-taking-part-in-sunday-mail-citybay-fun-run-to-raise-money-for-women8217s-and-children8217s-hospital/story-fnii5yv4-1226714396645

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The Soul Project

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The Soul Project  will be a collection of stories and poems written by other bereaved parents that have also suffered the loss of a child through illness, stillbirth, neonatal loss and early pregnancy loss.This will culminate in the Women’s and Children’s Paediatric Palliative Care Service (PPCS) 15th year of service. This book needs contributors for it to go ahead.

I will be on the look out for Beta Readers and other input for the book as well. The title of the book is yet to be decided.

*NB This book will be focusing on bereaved parents whose children have been patients or the families have received support from the Women’s and Children’s Hospital in Adelaide.

If you would like to find out more please sign up below to keep in the loop. Or you can email me direct jackie_barreau@live.com.au for more information on the submission process.

Shattering the silence on stillbirth

Return to Zero is a new feature film produced by Sean Hanish (writer/director/producer) and is based on his own experience of stillbirth after his wife lost their baby son in 2005. The story centres around a successful couple whose baby dies just weeks before the due date.

The movie’s cast includes Minnie Driver, as mum Maggie, and dad Aaron is played by Paul Adelstein. In the US alone over 36,000 stillbirths occur each year, and it seems according to Hanish its time to break the silence on stillbirth! Currently it has been shown at movie festivals and Hanish is currently looking for a distributor for the film.

A strong presence via social media including twitter https://twitter.com/return2zerofilm and facebook https://www.facebook.com/returntozerofilm is spreading a strong message to Hollywood. Through it’s Local Leaders around the world this movie indeed is the platform and there is an audience ready to support and view it.

For more information on the film click on the link below:

http://www.returntozerothemovie.com/synopsis.php

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*As reported in 2011 via http://www.news.com.au more than 2000 stillbirths occur in Australia every year and the rate is more than 50 per cent higher for indigenous Australians than non-indigenous, latest research shows.

Around the world between 2.1 to 3.6 million stillbirths occur every year, 98 per cent of them in developing countries. There are more stillbirths than children killed by AIDS and malaria combined.

http://www.news.com.au/national-news/medical-study-into-stillbirths-reveals-preventable-tragedy/story-e6frfkw0-1226038932586