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A community of supporters for Far North Queenslanders affected by rare conditions.

Endeavour Funship Playgound, Airport end of Cairns Esplanade

2.5 or 5km options (or show your support from the marquee)

$15 Adults, $5 kids over 5.

Lots of great prizes donated by local businesses

(you must pre register to be eligible)

Sausage Sizzle, Icypoles and drinks.

Arlo - 2024 Ambassador

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Arlo was born a healthy baby boy in January of 2013, with doctors noticing he had club foot, which his parents thought could be corrected with some physio over time. At two months old, Arlo's parents noticed he had minor feeding difficulties, that his right eye was turning in, and that he would extend his arms and legs out a lot. Upon a regular visit to the GP, it was evident Arlo needed to see a paediatrician. After 16 months of occupational, physio and speech therapy, a local paediatrician diagnosed Arlo with Cerebral Palsy (CP). He was 18 months old. Arlo's parents continued with therapies over time while always wondering how Arlo got CP with such a normal pregnancy and stress-free birth. When Arlo turned ten, his parents decided to do an MRI to see how CP affected his brain; the MRI scans came back as normal. This led us to the belief that he had been misdiagnosed and his parents decided to venture down the path of genetic testing. In Jan of 2023 Arlo was diagnosed with Catenin Beta-1 (CTNNB1) disorder. CTNNB1 is a very rare neurodevelopmental disorder where all individuals will have a mild-to-profound cognitive impairment, and up to 39% of reported individuals have a retina disorder, low muscle tone, peripheral spasticity, dystonia, and behaviour problems. Less common features include growth restriction, feeding difficulties, and scoliosis.

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