“When I saw the Kokoda Challenge was raising money for the RCH Children’s Neuroscience Centre, I couldn’t think of a cause closer to my heart. Taking on the trek is a way of continuing Ruby’s legacy and honouring her life.” Shortly after Ruby was born, she had her first seizure. Ruby underwent many tests to determine the cause, but there was no evidence to explain it. After returning home, parents Brad and Shari continued to notice “unusual things” and at eight weeks of age, Ruby was admitted to the RCH. However the cause of the seizures remained elusive and managing them proved difficult. As Ruby got older, the seizures became more frequent and lengthy, some lasting 12 – 16 hours. Ruby spent long periods of time at the hospital as doctor’s searched for a diagnosis. Though she was eventually diagnosed with the extremely rare DOORS Syndrome — which stands for deafness, onychodystrophy (malformation of nails), osteodystrophy (malformation of bones), mental retardation, and seizures — all treatment options were exhausted and Ruby was admitted to palliative care. “The support of the local and RCH Palliative Care teams was incredible. Daily phone calls, daily medication checks, and how closely they worked together to give Ruby the best care.” Shari, Brad, and siblings Harry and Charlie took Ruby home for Christmas 2013. Sadly, On December 27, Ruby passed away. Shari and Ruby’s godmother Michelle are honouring her memory by joining the Anzac Kokoda Challenge 2015 to help others affected by neurological disorders. This is about raising awareness and helping other families. We understand other families may have a similar journey to ours, however, we hope that the experiences the staff had with Ruby continue to assist in the treatment of other children. We just want to give back a little. To support Shari and Michelle’s fundraising, visit bit.ly/smkc2015.
Posted on: Fri, 05 Dec 2014 23:00:02 +0000