Her Name Is Ruby

This is for my niece, her name is Ruby.

A beautiful little girl with a bright smile who sadly and suddenly left this world on 01 February, leaving behind her heartbroken mother Ashleigh and adored sister Sienna.

Ruby was born in September 2016 and was diagnosed in 2018 with having Cockayne Syndrome Type 2 which is an incurable, inherited medical condition, primarily consisting of premature aging and a failure to thrive. Ruby was born prematurely with microcephaly and cataracts. As she grew, she failed to meet her milestones, as such was unable to develop the muscle tone to sit up, crawl or walk. She was also intellectually impaired and unable to speak, however it was apparent to anyone who had the pleasure of meeting and spending time with Ruby, how bright her personality was and how she knew to love and be loved. Her smile, little laugh and gestures were her way of communicating.

Her little life was one lived to the fullest including attending mainstream kindy at Okinja ELC where she met and made so many friends, accepting of her just as she was and from where she graduated in 2021. A community fundraised trip to the UK in 2018 to attend an Amy and Friends Conference, where families from all around the world gather annually to meet with doctors and support each other, was yet another highlight for her family.

Other holidays throughout the year, along with trips to the park and local attractions with her family were all things to bring normality to the life of this extraordinary individual. Ruby was a much loved daughter, sister, grand daughter, niece, cousin and friend to many. Her little bug eyes from her glasses were adorable and her infectious smile and spirit lit up the world.

Sadly, Ruby contracted COVID before being able to be vaccinated. Her family believes the opening of QLD borders prior to the rollout of vaccines being available for children has contributed to her passing, and perhaps more support and forethought should have been given to the families of the young and vulnerable, however acknowledge that Ruby’s genetic condition had ultimately run its course, with sufferers of this syndrome having a life expectancy of 5-7 years. Having been on ‘borrowed time’ since conquering pneumonia in both lungs in June of 2020, her little body had endured so much and was unable to fight any further illness.

This page has been set up to support Ruby’s grieving mother and sister in the coming months whilst they process the loss of their cherished loved one. Some of these funds will also be donated to Make a Wish Foundation and the Amy and Friends Support Group on behalf of Ruby. Any support you can give is greatly appreciated.

We really just wanted the world to know, she wasn’t just a child who died with COVID, she was someone’s child, she was my sister Ashleigh’s beloved daughter and her name was Ruby.