HELPING HANDS TRIVIA NIGHT - RUBY TUITE

SATURDAY 13TH SEPTEMBER | DOORS OPEN 6:30PM | START 7:00PM | TEAM OF 6 OR 12 ($25PP) 

Ruby is just 18 months old and has been diagnosed with Spino-Cerebellar Ataxia 42, severe with neurodevelopmental defects (SCA42) a condition so rare that only 20 cases have been documented worldwide. This devastating genetic condition was the result of a spontaneous mutation a one-in-a-million chance no one could have predicted.

SCA42 causes minimal growth in Ruby's brain, leading to severe physical and developmental challenges. It is unlikely Ruby will ever walk independently, and there is a high risk of seizures, speech limitations, and long-term feeding difficulties. Already, Ruby has faced significant hurdles, including hospitalisation for a feeding tube, and she requires round-the-clock care, therapy, and specialised medical support at Sydney Children’s Hospital.

This diagnosis has completely changed the lives of Ruby and her family. They now face an uncertain future filled with medical appointments, therapy, home modifications, and the ongoing need for specialised equipment and care. But this is not just a diagnosis it is a lifelong reality of complex care, uncertainty, and heartbreak for Ruby and everyone who loves her. Ruby is a beautiful, gentle soul, trapped in a body that may never fully cooperate, and she will require full-time care and support for the rest of her life.

Let's show Ruby and the Tuite family what we do best and support our community in need!