Archie is our bright, cheeky and adventurous little Batten Warrior. He has always been non-verbal, but that certainly doesn’t mean he is quiet! Archie is incredibly vocal and loves to babble, make noises and let the world know he is there.

His cheeky personality, big energy and infectious smile make him impossible not to love. He is a little thrill seeker and absolutely loves anything fast. He has a huge love for trucks, buses and trains and could happily spend his days watching them go by.

Archie also adores animals and has a special love for dinosaurs and farm animals, with cows being a particular favourite.

From a young age, Archie’s development looked different. He was diagnosed with global developmental delay and never gained many of the gross and fine motor skills that typically develop during early childhood.

But Archie has always done things in his own way and in his own time. One of his greatest strengths was running and he was fast! Sadly, this is now one of the skills Batten disease is beginning to take from him. Yet amongst the losses, there are still beautiful achievements to celebrate. Archie has recently learnt to walk up stairs with support, something he had never previously been able to do. For our family, every new skill and every little milestone means so much.

Archie’s journey towards a Batten disease diagnosis began when he had his first seizure. His baby sister, Ivy, was only around two months old at the time.

After Archie’s second seizure, he underwent an MRI and doctors attempted an EEG, but neither gave us the answers we desperately needed. With Archie already significantly behind in his development, non-verbal and diagnosed with global developmental delay, we knew there had to be something more going on.

Genetic testing became one of our last options for finding an answer.

After around four months of appointments, investigations and uncertainty, we finally received the diagnosis that would change our lives forever. Just 10 days after his third birthday, Archie was diagnosed with CLN2 Batten disease.

Knowing Batten disease is genetic also meant facing another terrifying unknown whether Ivy could be affected too. At around 10 months old, she underwent genetic testing. Thankfully, her results showed that she is unaffected.

Today, every second week our family makes the long journey to The Royal Children’s Hospital for Archie’s treatment. By the time we travel to Melbourne, spend the day at the hospital and make the journey home again, treatment days can be around 12 hours long.

And then, two weeks later, we do it all again.

It is exhausting, but we would travel any distance and do anything we possibly could to give Archie more time and preserve the abilities he has for as long as possible.

While Batten disease may continue to take skills from Archie, it will never take away who he is.

We are incredibly proud of our little Batten Warrior. We will continue to celebrate every achievement especially the ones that might seem small to others but mean everything to us cherish every moment and fight alongside Archie every step of the way.