Dane and Matt Cartwright are brothers who share an unbreakable bond forged through the challenges of living with CLN3 disease (Juvenile Batten disease). As is common for the CLN3 form of Batten disease, their journey began in early primary school when Dane's vision started deteriorating. At just seven years old, he was diagnosed with vision impairment due to Cone-rod dystrophy (CORD). Initially thought to be stable, his eyesight continued to decline, leading their family into a new world of support services, including Vision Australia and Guide Dogs. Both boys soon began learning braille and cane training.
Photo: Dane and Matt when they were young - at the Great Barrier Reef (left) fishing (right)
It wasn’t until Matt (the younger of the brothers), who exhibited similar symptoms upon entering primary school, suffered a seizure in Grade 3 that the full picture became clear. At ages nine and twelve, Matt and Dane were diagnosed with Juvenile Batten disease. Their mother, Kaz, recalls the heartbreak of the diagnosis but acknowledges that it finally explained many of the difficulties they had been facing, including behavioural challenges.
Photo: The Cartwright family, from left to right: Glenn, Dane, Kaz & Matt
The Cartwrights became passionate advocates for inclusion and awareness. The boys promoted braille in their school, welcomed visits from the Australian Blind Cricket Team, and introduced Goalball to their peers, excelling in the sport against their blindfolded classmates. They also participated in state-level cross country and zone athletics. They kept busy with all types of sports including little athletics on the weekend. However, one of the hardest aspects even from this time, was navigating the behavioural symptoms of Batten disease in a world unfamiliar with the condition. Due to the lack of Batten disease specific symptom management, their family struggled to get the necessary support and they had to resort to labelling their boys with every possible thing so they could to get the help they needed. If only the professionals then, understood what we do now, about using a ‘dementia lens’ and the impact of cognitive decline and not just dismissing things as being ‘naughty’.
Transitioning to high school was another major hurdle as it wasn’t a straight forward progression to a mainstream secondary school. Sending Dane to a SSP school was a difficult decision, but it ultimately provided the supportive environment he could thrive in. Schools for Specific Purposes (SSPs) provide specialist and intensive support in a dedicated setting for students with moderate to high learning and support needs. As young teenagers, the boys found joy and belonging in rugby league and soccer teams for people with disabilities, where they built confidence and a sense of purpose and fulfilment.
Determined to make lifelong memories, the Cartwright family made a bold decision: they sold their home, packed up, and travelled around Australia. What started as an idea quickly grew into a community-driven adventure, with incredible support from all around. An article in the local newspaper and letters to local businesses led to overwhelming generosity—BP Castrol supplied fuel, and the family received half price tyres from Coopers, among many other contributions. With the help of wonderful friends, they established The Carty Boys Foundation and raised an astounding $100,000 during their first fundraising event. Their cause even reached the NRL, where at a Sharks vs. Cowboys game, players wore yellow and black, and volunteers collected donations for the foundation.
Photos: Dane and Matt in front of the family's 4WD and caravan that they travelled in around Australia
Photos: Dane and Matt meeting players at the Sharks' game
Photo: Wonderful volunteers collecting donations at the Sharks' game
Between 2010 and 2011, the Cartwrights embarked on two six-month journeys around Australia, exploring nearly the entire coastline and venturing inland through the middle, returning between trips to spend Christmas with family. Dane and Matt, then 11 and 14, were exempt from homeschooling and embraced the experience of a lifetime. Along the way, they visited another family in Perth whose sons, Curtis & Luke Halley, also lived with CLN3, strengthening their connection to the wider Batten disease community.
Photos: (left) visiting the CLN3 family in Perth, (right) Dane and Matt at Uluru, NT
When it came to considering settling down again, it became apparent that Glenn and Kaz would need to consider the boys’ expected changes in mobility as they grew older. The family relocated from south of Sydney to northern NSW, where Dane and Matt’s father, a builder by trade, designed and constructed a custom home to accommodate their future needs. The transition to a new school across the Queensland border came with its own battles, particularly with transportation. Though braille wasn’t available at the new school, it offered a wealth of encouragement and opportunities and the most positive environment. Making new friendships was challenging by this age, but they did make some lasting connections, particularly with a few friends they can still make a phone call to today.
Today, Dane and Matt are men in their late 20s, living independently of their parents, in a home. They love being together in the same place —an achievement their parents fought tirelessly to secure. Glenn and Kaz remain deeply involved in their sons’ lives, the management of their care and direction of their multidisciplinary team. Regular visits, outings to the pub, and even sleepovers, maintains their strong family ties. Some of Dane and Matt’s greatest joys include listening to music on their boom box and enjoying hydrotherapy sessions with their dad.
Photo: Dane enjoying hydrotherapy in the pool with Glenn
The Cartwrights’ story is one of resilience, love, and an unwavering commitment to making the most of every moment. Through every challenge, they have found strength in family, community, and adventure, proving that even in the face of adversity, there is always room for joy and connection.
If you would like to hear more about what Dane and Matt are up to, you can follow The Carty Boys Foundation on [ Facebook ] and [ Instagram ].
Photo: Dane and Matt when they were young - at the Great Barrier Reef (left) fishing (right)
It wasn’t until Matt (the younger of the brothers), who exhibited similar symptoms upon entering primary school, suffered a seizure in Grade 3 that the full picture became clear. At ages nine and twelve, Matt and Dane were diagnosed with Juvenile Batten disease. Their mother, Kaz, recalls the heartbreak of the diagnosis but acknowledges that it finally explained many of the difficulties they had been facing, including behavioural challenges.
Photo: The Cartwright family, from left to right: Glenn, Dane, Kaz & Matt
The Cartwrights became passionate advocates for inclusion and awareness. The boys promoted braille in their school, welcomed visits from the Australian Blind Cricket Team, and introduced Goalball to their peers, excelling in the sport against their blindfolded classmates. They also participated in state-level cross country and zone athletics. They kept busy with all types of sports including little athletics on the weekend. However, one of the hardest aspects even from this time, was navigating the behavioural symptoms of Batten disease in a world unfamiliar with the condition. Due to the lack of Batten disease specific symptom management, their family struggled to get the necessary support and they had to resort to labelling their boys with every possible thing so they could to get the help they needed. If only the professionals then, understood what we do now, about using a ‘dementia lens’ and the impact of cognitive decline and not just dismissing things as being ‘naughty’.
Transitioning to high school was another major hurdle as it wasn’t a straight forward progression to a mainstream secondary school. Sending Dane to a SSP school was a difficult decision, but it ultimately provided the supportive environment he could thrive in. Schools for Specific Purposes (SSPs) provide specialist and intensive support in a dedicated setting for students with moderate to high learning and support needs. As young teenagers, the boys found joy and belonging in rugby league and soccer teams for people with disabilities, where they built confidence and a sense of purpose and fulfilment.
Determined to make lifelong memories, the Cartwright family made a bold decision: they sold their home, packed up, and travelled around Australia. What started as an idea quickly grew into a community-driven adventure, with incredible support from all around. An article in the local newspaper and letters to local businesses led to overwhelming generosity—BP Castrol supplied fuel, and the family received half price tyres from Coopers, among many other contributions. With the help of wonderful friends, they established The Carty Boys Foundation and raised an astounding $100,000 during their first fundraising event. Their cause even reached the NRL, where at a Sharks vs. Cowboys game, players wore yellow and black, and volunteers collected donations for the foundation.
Photos: Dane and Matt in front of the family's 4WD and caravan that they travelled in around Australia
Photos: Dane and Matt meeting players at the Sharks' game
Photo: Wonderful volunteers collecting donations at the Sharks' game
Between 2010 and 2011, the Cartwrights embarked on two six-month journeys around Australia, exploring nearly the entire coastline and venturing inland through the middle, returning between trips to spend Christmas with family. Dane and Matt, then 11 and 14, were exempt from homeschooling and embraced the experience of a lifetime. Along the way, they visited another family in Perth whose sons, Curtis & Luke Halley, also lived with CLN3, strengthening their connection to the wider Batten disease community.
Photos: (left) visiting the CLN3 family in Perth, (right) Dane and Matt at Uluru, NT
When it came to considering settling down again, it became apparent that Glenn and Kaz would need to consider the boys’ expected changes in mobility as they grew older. The family relocated from south of Sydney to northern NSW, where Dane and Matt’s father, a builder by trade, designed and constructed a custom home to accommodate their future needs. The transition to a new school across the Queensland border came with its own battles, particularly with transportation. Though braille wasn’t available at the new school, it offered a wealth of encouragement and opportunities and the most positive environment. Making new friendships was challenging by this age, but they did make some lasting connections, particularly with a few friends they can still make a phone call to today.
Today, Dane and Matt are men in their late 20s, living independently of their parents, in a home. They love being together in the same place —an achievement their parents fought tirelessly to secure. Glenn and Kaz remain deeply involved in their sons’ lives, the management of their care and direction of their multidisciplinary team. Regular visits, outings to the pub, and even sleepovers, maintains their strong family ties. Some of Dane and Matt’s greatest joys include listening to music on their boom box and enjoying hydrotherapy sessions with their dad.
Photo: Dane enjoying hydrotherapy in the pool with Glenn
The Cartwrights’ story is one of resilience, love, and an unwavering commitment to making the most of every moment. Through every challenge, they have found strength in family, community, and adventure, proving that even in the face of adversity, there is always room for joy and connection.
If you would like to hear more about what Dane and Matt are up to, you can follow The Carty Boys Foundation on [ Facebook ] and [ Instagram ].