Milli Evrard, who was born on July 14, experienced profound hardship from the moment she was born. Her painful beginnings were marked with a broken spirit, two broken arms, and two broken legs. Within hours they had rushed the newborn into the neonatal critical care unit at Mater Mothers’ Hospital in Brisbane. Tragically, their daughter lived just six days, with her parents, Dylan and Rochelle Evrard, left to face an unimaginable loss.
Evrards’ journey to parenthood had already been long and difficult. After years of failing to conceive on their own, they finally got some excellent news. During their March 2023 Gold Coast wedding, they savored dual celebrations — their soon-to-arrive little one, and an exciting gender reveal! Most significantly, it was when Rochelle was 22 weeks pregnant with her daughter Leslie that her doctors found out that she had a problem.
That joy of anticipation soon turned to heartbreak. Genetic testing revealed that Milli had a “de novo mutation.” As with all spontaneous genetic changes, this originated either at fertilization or in the very earliest stages of cell division. This mutation leads to a rare disease called nemaline rod myopathy. It is a rare musculoskeletal disorder with a prevalence of approximately 1 in 50,000 live births [4]. The condition not only led to mobility challenges for Milli, but changed the structure of her bones.
A Short Life Filled with Love
During her short time on earth, Milli impacted the lives of her parents in profound ways. Her mom, Rochelle, remembers this as one of many moments that captured the sweetness and the sadness of their time.
“My whole pregnancy, I was expressing that I was a bit concerned,” Rochelle shared, highlighting her apprehension leading up to Milli’s birth. Beyond these fears, though, was an unshakable love and hope that welcomed their daughter earthside.
In the precious time they got to spend with Milli, they made the most of every moment. “We didn’t know that would be the one and only time she ever opened her eyes,” Rochelle said, reflecting on the deep emotional impact of those precious seconds. The couple found solace in small gestures. When they touched her, even though she couldn’t move her body, Milli would respond slightly by moving her little toes or fingers.
“She definitely reacted to our touch and our sound.” – Rochelle Evrard
In some cases, the harshness of their lived conditions darkened the glow of these small victories. Instead, on July 20, Milli passed in her parents’ arms, and the world will never be the same without her.
The Search for Answers
Like the Evrards’ story, it’s a story of deep loss. Along the way, it brings into focus how complex genetic conditions can be, as well as how limited today’s medical technology truly is. Even with advanced genetic sequencing done on Milli, doctors were unable to determine a clear cause of death. This lack of certainty is typical in studies of ultra-rare genetic disorders.
“In a third of rare presentations, we don’t get an answer … so, we do have families that are in limbo,” said Professor Coman, a specialist involved in analyzing cases like Milli’s. Not being able to give clear answers can make the grieving process even harder on families who are already suffering from unimaginable grief.
For others, getting a diagnosis—even one that is life-limiting—gives the family that sense of closure. “But for this family, and families where we get an answer, even if it’s a life-limiting answer, there is still what we call dignity in diagnosis,” Professor Coman explained. “It gave them information. And that’s age appropriate too, but I think that’s really important for the grieving process as well, an understanding of what happened and why.”
A Lasting Impact
Rochelle has since sought solace through remembrance. To memorialize her daughter, she recently got a tattoo on her right calf. The design shows her holding Milli, representing a loving moment they shared. This act signifies not only love but the enduring impact Milli had on her parents’ lives in her short time.
The emotional toll of losing a child is unimaginable. This catastrophic loss usually leads to an intense examination of society’s expectations about parenthood and grieving. Rochelle poignantly remarked on the struggles faced when returning home after such a loss:
“I remember years ago somebody saying, ‘No one ever prepares you for an empty capsule in the car when your baby dies.’” – Rochelle Evrard
This passage describes the cold, hard truth that too many families—including those represented in Allie’s law case—experience when an infant dies unexpectedly.
Researchers remain optimistic, as new breakthroughs in genetics and medical science continue to be made. Their goal will be to untangle the mysteries underlying conditions such as Milli’s. Professor Coman noted the challenge ahead: “If you can figure why that happens, you’ll win a Nobel prize for genetics.”
