Christmas miracle for Gold Coast family who lost daughter, six days old, to rare genetic disorder

A Gold Coast family has a Christmas miracle coming their way and is full of hope - after the tragic loss of their daughter last year. FULL STORY

Gold Coast couple Rochelle and Dylan Evrard are hoping their Christmas heartbreak will turn to festive joy.

The couple lost their six-day-old daughter Milli to Nemaline Rod Myopathy – an incurable and rare genetic disorder – in July last year, with the emotion of the loss heightened during the festive period.

However, the Evrard couple are hoping Christmas may be a little more joyful this year as they prepare to welcome their second baby, due in April next year.

Mrs Evrard, of Mudgeeraba, said it was difficult to get into the spirit of Christmas.

“We should have an almost 18-month-old crawling around, pulling decorations off our tree, but we don’t,” she said.

“I’m sharing my story because not many people talk about what it’s like to celebrate Christmas after the loss of a baby.

“I think I was in shock – it really rocked me. I was so sad, hysterical. We had cute little outfits ready for Milli to wear and later when we unpacked them, I burst into tears.

“We also had a gorgeous bauble made in hot pink with an angel painted on it, her name and ‘Milli’s first Christmas 2023’.

“I am praying that by Christmas next year I will have Milli’s brother, a precious baby boy, in my arms,” she said.

Mrs Evrarrd with Milli, who passed away from a rare genetic condition. Picture: Supplied

Rochelle Evrard’s tattoo for Milli at Miami Beach. Pic Annette Dew

Milli’s condition affects one in 50,000 babies and is a congenital, often hereditary disorder, with symptoms including muscle weakness, swallowing dysfunction and hypoventilation – breathing that is too slow or shallow.

Ms Evrard said Milli was transferred to the Neonatal Critical Care Unit at Mater Mothers’ Hospital in South Brisbane just hours after she born at a Gold Coast hospital.

“We didn’t find out anything was wrong with Milli during pregnancy scans,” she said.

“It wasn’t until she was born that we realised something was seriously wrong. She was floppy and purple.”

Mrs Evrard said with Christmas around the corner, she understood the heartache many other parents have gone through after losing a child.

“We will have family here at our house and, just like any day, I always imagine what things would be like with Milli here,” she said.

“Christmas time will always be tough, but we know we are not alone.”

Originally published as Christmas miracle for Gold Coast family who lost daughter, six days old, to rare genetic disorder