Zayda’s mum Alie knew that something wasn’t right with her newborn daughter just hours after she came into the world.
“She was just so cold, she was wrapped in six or seven blankets, in the middle of February,” explained Alie.
Alie and her husband Muj were assured everything was fine, but after a few days at home Alie’s gut told her she needed to take Zayda to the emergency room.
Little Zayda was rushed up to the Monash Children’s Hospital Neonatal Intensive Care Unit (NICU) and for four weeks she was put through a series of tests, including invasive lumbar punctures and blood draws to determine why she was so cold and unresponsive.
“I remember one of the NICU doctors holding out her arms and urging me to hand over Zayda and to trust her to figure out what was wrong – so I did,” recalls Alie.
After about four weeks of tests, Dr Lilian Johnstone, Head of Nephrology at Monash Children’s Hospital delivered the news to Alie and Muj.
Zayda was diagnosed with congenital nephrotic syndrome – more commonly referred to as kidney disease.
“We were devastated and terrified, we didn’t know what this meant for our daughter, but Dr Lilian was so comforting and reassuring. She explained everything and allowed us to understand that this was just the beginning of Zayda’s journey, and that she and the nurses at MCH would be with us every step of the way.”
For now, Zayda is living her life as a bubbly, active toddler. Twice weekly, she visits Monash Children’s Hospital for protein infusions to replace this crucial nutrient as her kidneys simply don’t absorb the levels required for Zayda to grow and thrive as she should.
“She is so brave and isn’t fussed about the constant back and forth between home and the hospital,” says Alie.
“The nurses adore her, and she adores them – they are like our second family, and they make this journey just that little bit easier.”
Zayda will eventually require dialysis, and a kidney transplant, with Alie and Muj soon to commence the required testing to see if they are a good match.
“Yes, it’s scary but Muj and I won’t hesitate if it means our little girl can have the life she deserves,” explains Alie.
“We are especially excited to attend the walk this year knowing that the funds raised will be going to help support the kidney kids,” says Alie.
“Kidney disease isn’t something many people know about or understand, so the more awareness we can create, and funds we can raise, the better outcomes will be for kids like our Zayda.”
“We have a bunch of our friends and family coming along to support, and we really hope to see plenty of people from the community there as well – it means so much to us.”
To register for the 2024 Monash Children’s Hospital Walk, please visit www.mchwalk.com.au
Above: Little Zayda having treatment with a smile on her face at Monash Children’s Hospital
