Maximus’s Story on Youtube

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

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.

Thank you!



4 thoughts on “Maximus’s Story on Youtube

  1. Was curious about the salmon coloured lesions on your sons skin. I have salmon coloured lesions on one of my legs that my parents told me was a birth mark until I was in my twenties when they told me that I wasn’t born with it that they developed when I was about 10 months old, and no doctor knew what it was. I put on a lot of weight and my communications skills were pretty slow developing. Just curious if they lesions are there always or have gone. I am now 36 and still have the lesions but they have faded.

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