When it comes to building capacity, Alex Tann has found the perfect touch.

Flying up the driveway and into his house in North Adelaide after school, Alex can’t wait to connect with friends and family around the world on his new BrailleNote Touch.

“He comes home from school and says, ‘I’m going to check my email’, and really excitedly he grabs his BrailleNote and taps away,” said Alex’s father and Feros Care Local Area Coordinator (LAC) Phillip Tann.

“We’ve shared his email address with family and friends who have sent him messages from Scotland, Brazil, Ireland, England, America, New Zealand and from all over Australia.”

In “perfect timing”, the National Disability Insurance Scheme (NDIS) funded BrailleNote arrived just in time for Christmas for Alex, who has melted the hearts of many across his hometown of Adelaide.

The “little bionic man” for Phillip, and the “best firefighter ever” in the eyes of the city, Alex’s impressive growth via the BrailleNote is just one further step in defying the odds.

Now 11, Alex’s life changed forever in 2013, when doctors found a huge legion on his brain. Diagnosed with an aggressive primitive neuroectodermal tumour (PNET), Alex was only given just a one-in-ten chance of surviving.

However, after enduring hundreds of procedures, plus intensive chemotherapy and radiation therapy, and against all the odds, Alex is still here and thriving!

As a result of the chemotherapy and radiation treatment, Alex is blind and profoundly deaf, but it hasn’t held him back.

Utilising a cane and attending a school for the vision impaired, Alex utilises a bone conduction hearing aid and had a cochlear implant (provided by South Australia Health) turned on in February 2019.

A firefighter in training

The implant came 12 months on from when thousands rallied in Rundle Mall to watch the then eight-year-old realise his dream of becoming a firefighter.

Organised by Adelaide’s Mix 102.3, all eyes were on Alex as he roared into the shopping precinct aboard an SA Metropolitan Fire Service truck, before entering a sky lift to scale a smoking building  to save two of SA’s beloved athletes and footballers in Port Adelaide’s Travis Boak and Adelaide Crows’ Erin Phillips.

Also receiving awards including the City of Adelaide Official Crest, Phillip said the event warmed everyone’s heart.

“It was wall-to-wall with people with 10,000 there and Alex still talks about it… it was incredible,” Phillip said.

“In a noisy area previously, he’d latch onto me and wouldn’t let go, but he learned a lot from the experience and he’s a lot more comfortable with noise now.

“It shows you don’t have to put barriers in front of people. It’s about assisting people to find a way around those barriers.”

Alex’s capacity has continued to build, and whether it be finding a love for music, going dancing, or changing the temperature through voice command technology, he has found his groove.

“We take Alex out and about and he goes to community events and we took him to a concert recently and now he’s even singing and dancing,” Phillip said.

“Him and his sister Jenny go to scouts together – they’ve been brilliant with adapting activities to suit his needs.

“There are continual pathways for Alex and that’s really important.”

While Alex will continue to work on building his capacity in the short-term, including his enjoyment of getting involved in the kitchen, the medium to long-term goals include finishing school before looking at career and life options.

A career in disability support

Fittingly, Alex’s journey in part parallels that of Phillip’s, who was so inspired by his son’s planning meeting, he sought a career change.

Working in information technology at the time, Phillip saw an opportunity to give back to those like his son, and he has loved his journey so far. 

“Feros Care came out and did a review for Alex, and it was so happy and glowing,” he said.

“I thought, ‘this is an opportunity’, so I put in an online resume. I was confident enough to hand in my notice at my old job, and I got the role.”

Using his own personal experiences with Alex as inspiration and a way to connect with participants, Phillip said he couldn’t be happier.

“It’s been great. With Alex on the scheme, I understand the family side, but also the systemic side of what needs to occur, and I think that makes me a great resource to help participants navigate the system,” he said.

“I try to provide a calming effect and let people know I’m here to help, and I feel I am a good resource for them.

“The Feros Care team is also so much fun and we support each other. That says a lot about the people this career attracts.”