Levi & Narelle Need Our Help

On 19th August 2022, Levi John Barnes was born into this world and Narelle, after many years of the highs and lows of IVF, was finally the mum she had always dreamed of being. That first month was like any normal new mum and bub until at 5 weeks the unthinkable emergency call was made.

Levi appeared initially just a little grizzly however within a blink of Narelles eye he would become limp in her arms. The call went out to 000 and the beginning of a frightening new journey for Narelle and Levi would begin. Levi spent 6 hours being resuscitated at the Northern Beaches Hospital before being transferred to Sydney Children’s Hospital (SCH) ICU where he would be ventilated as they worked around the clock for over a week to isolate the cause.

Levi was formally diagnosed with having an episode of a rare condition called Atypical Haemolytic Syndrome (AHUS), which had not been seen in Australia in a baby so young, with less than 5 reported cases in this age group globally. He and Narelle would spend an additional week at SCH to work through the out-patient plan of Levi and the required medications to keep him alive. This plan included 3 weekly infusions via cannula which became more and more traumatic for both mum and bub over time. With some positive results early in the new year Levi was taken off treatment with close monitoring. Levi spent further time in hospital with fevers and low neutrophil levels which brought in the immunology team from SCH to work on his case.

Unfortunately, at 6months old Levi with a suspected gastro bug relapsed and was taken by ambulance again to SCH. This time his condition would worsen and Levi was placed in an induced coma, ventilated, blood and platelet transfusions and would need two rounds of dialysis to stabilise and for his kidney function to return. Levi and Narelle’s stay in hospital this time was an intense 6 weeks where tests revealed a rare genetic variation in Levi’s immune system, not seen before globally. Specilaist teams in France and the UK are continuing to run testing to help understand what is triggering these AHUS episodes.

With Levi’s condition and his susceptibility to viruses and bacterias, to put Levi into day-care is not an option and at this time Narelle is unable to return to work. Again this May Levi has been back in hospital for another 10 days fighting a virus with IV antibiotics with Narelle by his side.

Narelle and Levi need our help while they work to find appropriate answers and treatment for Levi’s condition. The funds raised will be used to support the family through this period by providing food, utilities, transport for Levi and Narelle. Anything additional we raise will be spent on Levis health both mental and physical as he continues to battle for his life.

Narelle is always the first person to support and lean into helping others. So, to our family and friends and all our friends of friends this is the worthiest of causes to jump on. We ask if you can help in any way big or small, we will be forever grateful and you will be making a huge difference to the lives of two very special souls.