Update on Maxi on The Shane Warne Foundation blog

Genetics, Mystery Illness, Neurological, Pediatric medicine, Rare Disease, Royal Children's Hospital, Uncategorized, Undiagnosed, Undiagnosed children, What I've Learnt

http://www.tswf.com.au/find-a-cure-for-maxi/update-maxis-progress/

A big thanks to ITalkTravel and The Shane Warne Foundation for their ongoing support.

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Herald Sun Article

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Thanks to the Shane Warne Foundation and ITalkTravel for making this trip possible.  And to all our wonderful friends, family and many other organisations who have continued to support Maxi through this journey.

Below link to Herald Sun Article on Maxi’s remarkable trip to the Undiagnosed Disease Program at the National institute of Health in Bethesda U.S.A.

http://www.heraldsun.com.au/news/victoria/us-program-offers-hope-for-battler-maximus-gill/story-fni0fit3-1226958026977

Hello America!

Genetics, Mystery Illness, Neurological, Pediatric medicine, Rare Disease, Royal Children's Hospital, Uncategorized, Undiagnosed, Undiagnosed children

It’s been a big week for Maximus, first appearing in this weeks New Idea Magazine, then was on Channel Seven news, and in the Herald Sun Newspaper paper,   A huge thanks to everyone involved and a special thanks to the Shane Warne Foundation and Tom Manwaring who are sponsoring our trip to the Undiagnosed Disease Program.  And huge thanks to all our wonderful supporters.

 

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Seven News Story on Yahoo.com

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I shall be doing a blog for the duration of the trip and here is the link below..

http://www.tswf.com.au/find-a-cure-for-maxi/l

One year since launching this website!

Genetics, Mystery Illness, Neurological, Pediatric medicine, Rare Disease, Uncategorized, Undiagnosed, Undiagnosed children


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It has been one year since we launched this website and so many great things have happened since we decided to go public in our plea to find a diagnosis and cure for our son. Hopefully our story and challenges have helped other families in similar situations.

Sadly; we do not yet have a diagnosis, but thankfully Maximus was accepted for evaluation at the National Institute of Health’s Undiagnosed Disease Program in USA.  A dream come true for us.  We’re heading there next month.

This trip would not be possible without the amazing help and support of friends and family, social media networks and organisations like the Shane Warne Foundation, The Melbourne Jewish Charitable Fund, Syndromes Without A Name Australia, The Wilhelm Foundation and many more.

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A wonderful local business where I have been a long term client, have generously offered to raise money for Maxi’s trip, by donating the sales of their organic products for the whole month of April.  Thank you Masci Hair and Spa and thank you everyone for sharing our story and supporting our efforts to help our Maxi.  This is a journey we are not on alone.

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One boy, one world, one fight, one life.

Genetics, Mystery Illness, Neurological, Pediatric medicine, Rare Disease, Royal Children's Hospital, Uncategorized, Undiagnosed, Undiagnosed children

So, we know there’s more than one,

We know the cure is; none,

We know the answers will come

But maybe too late for some.

We know it’s a road for many,

We know it’s a devastating journey,

We know it’s not that far away,

We know it’s your neighbour, your friend, your Aunt May.

But we don’t know what is wrong,

We fight to stay strong,

We don’t know what to do,

The clock is ticking too.

We don’t know who can fix this,

We don’t know what might be,

We lost something the day we learnt this fate was meant to be.

Our dreams torn away, in a matter of one day.

But our love only grew stronger and more meaningful and sound

We play, we love, we live, we party and rarely let it get us down.

We have taken this in our stride and we reach for the stars, for no matter what? Where? Who? And when?

As long as we’re together, we are happy again.

Our lives have meaning and our moments are rich,

with two cheeky boys and their funny antics

We will never back down, we will keep the flame alight

Creating awareness, and, never giving up the fight.

There is no turning back; it’s our mission, our goal

To save our child, from this deep black hole.

By Yael Cohn

Hanging about with Molly and Shane

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The Shane Warne Foundation have been a huge support to Maximus along with several other organisations, charities and community services.  We are so happy this opportunity came about to thank Shane Warne for the ongoing support for Maximus with equipment and supporting several of his other needs.  They are on this journey with us, Helen, Stacie & Jonno from TSWF have been remarkable in helping us get through some of the toughest times.  And of course special thanks goes to Molly Meldrum and Ziggy.

Wow! Maxi on the front page of the paper? Again!  Thank you Herald Sun!

Wow! Maxi on the front page of the paper? Again! Thank you Herald Sun!