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Children's Tumour Foundation

Alex's Story

Alex was born in 2008 in Griffith, rural NSW. Alex hardly slept, cried lots and had monthly bouts of tonsillitis, but was always on the go, as if driven by a motor. The mornings would usually start before 5am and he would go all day before finally falling asleep (albeit with difficulty) but would then wake constantly throughout the night.

By the age of 3, Alex had become quite a dangerous child to have about. He had no regard for his own safety and would often scale the fence and disappear into the neighbourhood while we frantically searched for him. He had every characteristic of a child with ADHD, but at such a young age.

Fortunately, we have a wonderful local Paediatrician, Professor Max Hopp, who took one look at Alex and said;

I think he has Neurofibromatosis – you need to go to Sydney to see a specialist to get him officially diagnosed. Oh and don't google it until then."

Of course, I googled.

Dr Google was a scary, scary place when it came to learning about NF. We went to Sydney and met the wonderful team at the NF Clinic at Westmead who quickly prescribed a trial of stimulant medication for Alex. However, within two weeks, Alex suddenly lost all bowel and bladder function. Dr Hopp sent us straight back to Sydney where it was discovered that Alex had a Chiari Malformation, which causes a build-up of fluid in his spinal canal. We were told he would need brain surgery – ASAP.

Alex endured a 10-hour surgery by the amazing Dr Mark Dexter to decompress his brain. He was only 3 years old!!! He was a trooper and recovered with only a few minor hiccups along the way. Alex has had yearly MRI's to keep an eye on the fluid build-up within his spine – which to date is stable.

From a NF point of view, Alex struggles with his behaviour and is on multiple stimulant medications which he often out grows. He is covered in his 'special spots', but no obvious lumps or bumps yet. His vision is carefully reviewed each year, but at this stage his only concern is the Lisch Nodule in his eye. We visit the NF Clinic in Sydney yearly to monitor his symptoms and have been involved in many trials and studies along the way – always willing to help in the name of research.

We consider the Ronald McDonald House our second home and have made some beautiful friends while staying there. We always try to do something fun in amongst the doctor’s appointments and have been to many footy games, Luna Park and even gone to watch the Anzac Day march. Angel Flights have also been an amazing charity to call upon when needed as the road to Sydney is a long and hard one for to drive alone. We have even been taken to Sydney in a Jet!

Alex loves school, but struggles with the work, despite trying his hardest. 


Bullying has been an issue as has the anxiety, which has taken its toll on Alex.

Depression and anxiety reached its peak in 2018 when Alex made a suicide attempt. It absolutely devastated us. After lots of counselling and support, he is now a much happier, confident child who loves been outdoors and doing any this that is farm/ dirt/ mud/ machinery related with his mates. Alex is a champion runner, always finishing in the top three in his favourite event, the Cross Country.

Alex has been lucky enough to make a new best friend whom he absolutely loves and admires. Alex has made a personal connection with actor, Aaron Jeffrey (Alex Ryan from Mcleod's Daughters) who is a true gentleman and just seems to “get” Alex. They have bonded over their love of the land and shared some super special moments together.

The family recently got a new Dalmatian dog named Lucy, so we now have a spotty dog to match our spotty Alex as we face our next big set of hurdles - high school and puberty. With it will come a whole new set of challenges, but we will take it one day at a time and I’m sure Alex will take it all in his stride with that cheeky smile on his face".

Alex's Story

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