Last year, a lovely young film student named Siobhan Singleton, chose a topic that she was passionate about which was raising awareness of the plight of families facing issues surrounding undiagnosed diseases, she made her film about Maxi. So proud of all involved and appreciate all the support and time and effort everyone put in to help complete this.
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Article on Super Hero Jacob
Click on this link below for the latest news on Maxi:
A big thanks to ITalkTravel and The Shane Warne Foundation for their ongoing support.
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.
I shall be doing a blog for the duration of the trip and here is the link below..
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.
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.
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
Thank you Syndromes Without A Name Australia for inviting me to do a talk on Maximus @ Royal Children’s Hospital – Genetics Seminar, and big thanks to GSNV for publishing the talk on their site.
Maximus is our beloved 2-year-old boy who lives at home with mum, dad and his 5-year-old brother Jacob.
Up until 9 months of age, Maximus was a happy, healthy boy. One day an eye tumour appeared, followed by several skin lesions.
By 18 months of age, Maxi had developed multiple brain lesions, high blood pressure, instability with his gross motor function and sudden, unexplained weight gain.
The past 17 months have been a struggle for Maximus, with seven general anaesthetics, several hospital stays, as well as specialist and hospital visits each week. Yet there is still no definitive diagnosis.
We have created this site with the hope that someone will see this story and know something that we don’t.
We want to know; What’s wrong with Maxi?
We all know how dangerous Google doctoring can be, but I have read of cases where parents have discovered a diagnosis themselves by doing research and observing their child. This is because a parent has 24 hours a day to obsess and research a prognosis, whereas a specialist can only devote small amounts of time to one patient. So we thought the more people who see this story, the better chance Maximus has of coming closer to a diagnosis.
We also feel it’s important to share some of our struggles and joys with others as this may inspire, help or somehow make a difference for other parents going through similar situations.
Even though we live in Australia, we need to access the rest of the world to help us. We have tremendous resources in Australia, but sadly it’s never enough when your child remains undiagnosed and there is no apparent cure for what is a degenerative condition.
For more detail on Maxi’s journey so far please click on Maximus’s Story tab above.
For details on how you can help, click on How You Can Help? tab above.
For recent media interviews and articles click on Media tab above.
Please Follow, Like, Share, Subscribe… this is War – against the unknown, we need an army of strength to fight it….. we want to win.