Inspiring families

There have been some amazing families that I have met recently. For most bereaved parents re-living the past is still quite traumatic and still holds mixed emotions, but to then throw themselves into fundraising ventures for charities etc, I do find extraordinary.

One particluar family that I met about 12 months ago, set up their own fund in 2011 called ‘4in3’ the Mason Minniss Fund in memory of their late son Mason, who had MLD. The fund raises money exclusively for the WCH Foundation which is the official fundraising charity for the WCH hospital. The proceeds directly aid the Paediatric Palliative care Unit, here in Adelaide. To date they have raised in excess of $60,000.00.

The ‘4in3’ the Mason Minniss Fund holds a major fundraiser each year “A ladies night amongst the butterflies” where goods and services are donated by businesses, organisations, and anyone wishing to be involved, and then auctioned off.

It also holds other fundraisers throughout the year. Over Christmas it also delivered hampers to bereaved families of the WCH, donations were made by businesses and kind-hearted individuals.
This bereaved family like so many before it have turned a life-changing experience into a positive one!

For more information you can contact Cheryl or Rob Minniss by email: masonminnissfund@gmail.com

www.facebook.com/4in3themasonminissfund

www.twitter.com/cherminni

For more information on MLD:

http://en.wikipedia.org/wiki/Metachromatic_leukodystrophy

https://www.facebook.com/#!/supportALDS

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Cody

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 did he have the chance to feel the unconditional love penetrate through his very being.

This was a tragic day for my husband and I, as well as for our families. We organised a private funeral where Cody Alan was laid to rest.

October 15th is International Pregnancy and Infant Loss Rememberance Day. The wave of light invites baby loss families, friends and loved ones from around the world to join in honor and remembrance of their loved and longed for babies on October 15 at 7:00 pm in all time zones.

‘Lighting begins in the first time zone and remain lit a period of one hour, with the next time zone lighting respectively. The result is a continuous chain of light encompassing and spanning across the world and around the globe for a 24-hour period illuminating the night in love and light in honor and remembrance of our children.

Candles, monuments and landmarks are lit individually as well as in groups, in homes and community settings. Wherever in the world you are, you will be joining families, friends and loved ones across the world and around the globe for the International Wave of Light™ in memory of all children who pass away during pregnancy and in infancy.’

‘The campaign for Pregnancy and Infant Loss Remembrance Day in Australia began in May 2008 when Nicole Ballinger of the State of New South Wales (NSW) approached her State and Federal MPs to request their help in establishing this Day.[10] Although aiming for a nationwide declaration, Ballinger took this two-pronged approach as she had been advised that federal motions are often passed once they are first passed at the State level.

Guided by her MPs, Joanna Gash (Federal) and Shelley Hancock (State), Ballinger lobbied both levels of government beginning in 2008: utilizing petitions, the internet and social media, and repeated correspondence with Australian Prime Ministers, NSW Premiers, Health Ministers, Senators and other MPs. In support, Gash and Hancock continued to present this motion in parliament at the State[11] and Federal[12] levels.

On October 14, 2011, Hancock and NSW Health Minister Jillian Skinner announced the official declaration of Pregnancy and Infant Loss Remembrance Day in NSW. As of 2016, Ballinger continues to lobby the Australian government, with the support of Gash, to acknowledge Pregnancy and Infant Loss Remembrance Day officially and declare across Australia.

The campaign for recognition of Pregnancy and Infant Loss Remembrance Day in Western Australia began in 2012 by John and Kate De’Laney. However it was a letter that Mrs De’Laney penned, in September 2013, to Premier Colin Barnett which brought Pregnancy and Infant Loss Remembrance Day to his attention. Mr and Mrs De’Laney then began working with the Honorable Donna Faragher, Parliamentary Secretary to have the day formally recognized.

On October 15, 2014, the Western Australian State Government passed a bipartisan agreement to officially recognize Pregnancy and Infant Loss Remembrance Day. In the motion put before the Legislative Council Premier Colin Barnett said “Through this remembrance day we hope to create a greater awareness in the community about the immeasurable impact that pregnancy and early infancy loss has on so many women, their partners and families within our community. We hope that through the recognition of their loss and the subsequent pain endured, this remembrance day can play a small part in enabling families to find a way forward in their grieving, and in time heal the deep wound of loss. Most importantly, this remembrance day acknowledges that these babies were lovingly anticipated and remain forever in their parents’ hearts.” [15]

Ms & Mrs De’Laney continue their efforts to have October 15 recognised at a National level with representations to The Prime Minister, The Leader of The Opposition and a number of other Federal Members of Parliament. They have also established the ‘We Remember’ campaign which is a social media campaign aimed at demonstrating grass roots support for National recognition of October 15 Australia wide.’

A fleeting moment our chance to connectmy love was lostwhen you were laid to rest.Wrapped in a blanketa bonnet on your headthese photos are allthat we have left.bheading

The Beginning

Well, finally I have started my own blog, for a number of reasons.

  • To write about my journey as a bereaved mother.
  • To create awareness about many rare diseases,of which my daughter has been recently diagnosed with.
  • To provide information and resources on some amazing bereaved families.
  • To also share stories about other incredibly gifted people I have been privileged to know.
  • To also shamelessly plug a new book I am writing.