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Smart Pup for Maxi FaceBook Page launched today.
dog, Genetics, Mystery Illness, Neurological, puppy, Rare Disease, UndiagnosedThe Most Beautiful Secret
Genetics, Mystery Illness, Neurological, Pediatric medicine, Rare Disease, Royal Children's Hospital, Undiagnosed children
Path to a diagnosis – the search for another Maxi begins
Genetics, Mystery Illness, Neurological, Pediatric medicine, Rare Disease, Royal Children's Hospital, Undiagnosed, Undiagnosed childrenClick on this link below for the latest news on Maxi:
Hello America!
Genetics, Mystery Illness, Neurological, Pediatric medicine, Rare Disease, Royal Children's Hospital, Uncategorized, Undiagnosed, Undiagnosed childrenIt’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..
Big Day for Maximus!
Uncategorized18th May, 2013 – Still no closer to a diagnosis for Maximus but a huge day for us in spreading the word. First we woke up to our baby boy on the front cover of the Herald Sun newspaper!
And the article:
Later that day; a story on the news:
Seven News Melbourne – 18th May 2013
Thank you so much to all of the people who have written, shared, responded, assisted and cared for our Maxi. There has been a fantastic response and we are sifting through all the replies and suggestions, shall keep you posted. Best wishes, Yael
Maximus’s Story on Youtube
Genetics, Mystery Illness, Neurological, Pediatric medicine, Rare Disease, Royal Children's Hospital, Uncategorized, Undiagnosed, Undiagnosed childrenMaximus 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.
Thank you!
Email: whatswrongwithmaxi@gmail.com
What's wrong with Maxi? 