Zed’s Funeral Cost

Hi Everyone,

Please take the time to read and feel Scott, Evelyn and Zed Wurramarrba's heartbreaking story.

Zed Jo Wesley Manggurra Wurramarrba was born a healthy beautiful boy on 23/02/2016.

Zed's parents, Scott & Evelyn, watched him grow into a beautiful young boy with no apparent issues or concerns. Zed's mother Evelyn made sure he had every health check & immunisation whilst growing - like clockwork, with every doctor's appointment completed. Even to the point of any slight cough, bruise or anything out of the ordinary - Zed was taken to the clinic for a check-up. The reason for such sensitive care was Evelyn and her partner Scott had lost a previous pregnancy 8yrs before - a stillborn. Hence, the extra care and loving attention to Zed's health and care.

As Zed grew Scott & Evelyn noticed his growth, by the way he stood, and his walk was a touch different to his friends - the explanation was put down to him being in a walker being as he was a heavy boy growing up. In late November 2022, Zed was at school and whilst trying to stand up - he complained to his mum he was hurting & when she stood him up, his legs could not hold his weight and he was in incredible pain.

Evelyn instantly took him to the local community clinic to exactly find out what the problem was. The following day Zed was flown to Gove Hospital with blood counts and special tests completed. What the doctors found was concerning enough to fly Zed to the Royal Darwin Hospital for extensive examinations. To make things even more sensitive - it was nearing Christmas with Zed, Scott & Evelyn in hospitals looking for medical answers and their concerns & worries increasing. Instead of them as a happy family putting the Christmas decorations up and buying Zed special presents.

In Darwin hospital - Zed was checked by the latest ultrasound technology and it was discovered his heart muscle wasn't as strong as a fully healthy boy and the heart valves were as thin as a couple of pieces of paper. And, to add, the overall heart muscle mass was deteriorating. Further blood tests were instantly sent to specialists in Melbourne and the wait to find out the result was painfully long!

Evelyn and Scott were told a heart transplant may be possible if the tests came back in Zed’s favour. This news gave the family all hope. The doctors advised them one disorder that everyone was hoping, praying and wishing for was the exact medical result that came back. However, it was later found out, Zed had Deesheeans Muscular Dystrophy (aka ruiner of lives!). So, all hope of a heart transplant was gone and the particular muscle dystrophy Zed had NO cure with no medicines or operations that could help Zed recover.

The doctors informed Mum and Dad, at this stage, Zed would be very lucky to make his 7th Birthday. It is so very disturbing to hear your tiny son has such little life ahead of him. What broke their hearts, even more, was knowing that if Zed had been diagnosed in his early stage of life, it could have been properly managed and Zed may have lived a lot longer.

Zed was in the ICU unit for nearly a month and weaned off the intravenous medication and moved to the children’s ward where he - ‘would be more comfortable' and where the family could be close to him at all times. Zed’s big ‘budda’ Kyle recorded a special video of - our Christmas Day in the children's ward. They had no idea - unbeknown to us this was posted on social media and the response was emotional from all We - Zeds - Mum and Dad, so lovingly appreciated!

Devastatingly, five short days later, on New Year's Eve (just shy of 4 pm) - Zed Jo Wesley Manggurra Wurramarrba - said to his mum that he was tired and wanted to sleep and was to NEVER EVER wake up.

This is OUR son Zed's heartbreaking story.

In this devastating time, Scott and Evelyn are arranging a funeral and would like support from family and friends to give Zed their son the funeral he deserves. 

Please donate what you can, as every donation counts toward this special cause.

Thank you to everyone from Scott, Evelyn and Family.