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Hi everyone,
Thank you all so much for your generosity, kindness, and support — it truly means the world to Brydie and Rob.
We’re heartbroken to share that Levi’s condition has sadly deteriorated significantly over the past four weeks. He is now receiving palliative care at home, surrounded by love and comfort.
As this deeply difficult time unfolds, we are hoping to raise additional funds to help support Brydie and Rob with the anticipated funeral and related costs, easing some of the financial burden as they focus on spending precious time with Levi.
We will be running the Bridge to Brisbane (5km) tomorrow. For every $100 donated in the next 24 hours, we’ll run an extra 1km in support of Levi.
Thank you again for all your love and support over the past 12 months.
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Life can take unexpected turns and sometimes those turns lead to unimaginable challenges. Rob and Brydie are facing one such challenge as they confront the devastating news of their son, Levi’s, terminal Hunter Syndrome (MPS II Severe) diagnosis.
Hunter Syndrome (MPS II) is a rare genetic condition in which the body doesn’t properly breakdown sugar molecules resulting in a number of health problems. There is currently no cure and the available treatments are not viable due to the severity of Levi’s condition. The average life expectancy of a person suffering with Hunter Syndrome (MPS II) is 10 years old. Due to Levi’s severity this time is not guaranteed.
In the face of this devastating reality, Rob and Brydie are committed to ensuring Levi has the best quality of life for the limited time we have left with him. For them to accept help has been a foreign concept to them both however the road ahead will be incredibly difficult and many people keep asking how they can help. Rob and Brydie ask you consider a monetary donation in place of gifts. This money will be put towards the on-going cost of therapy, medical equipment / expenses and sadly towards inevitable funeral costs. Any amount, big or small, is truly appreciated.
Rob and Brydie have been deeply touched by the overwhelming love, support and generosity from family and friends thus far.