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.