I WON’T GIVE UP: LIFE AFTER MENINGOCOCCAL DISEASE
“We’ll continue to raise awareness forever in the hope we can prevent another family from experiencing loss." - Sally, Rhainer's Mum
ABOUT MENINGOCOCCAL DISEASE
Meningococcal disease is a rare, but potentially devastating bacterial infection of the blood and/or membranes that line the spinal cord and brain. The illness can strike at any age, but children up to four years old and adolescents aged between 15 and 19 years old are at higher risk.1 Different strains cause invasive meningococcal disease and most Australians at risk are not fully protected.
Meningococcal disease can progress rapidly and be difficult to diagnose. The early symptoms such as fever and headache can easily be mistaken for a common cold. The distinctive meningococcal rash is an advanced symptom, which may or may not occur during infection. While most survive, if it is not diagnosed and treated quickly, meningococcal disease can lead to death or serious consequences within 24 hours.
Up to one in ten of those infected may die2,3 and around one in five may suffer serious long-term disabilities including brain damage, deafness or loss of limbs2
Four-year-old Rhainer, from Darwin, is part of a new national portrait series, I Won’t Give Up, which celebrates the strength and resilience of Australians who have been impacted by meningococcal disease. In 2017, two-year-old Rhainer’s identical twin sister, Skylar, died from meningococcal disease within 24 hours of the first symptoms presenting.
Growing up, the sisters were inseparable. They did everything together. “Together they were one. I can see what a massive impact losing Skylar has had on her sister’s personality,” remembers Sally, Rhainer and Skylar’s mum.
Today, Rhainer is one of seven Australians photographed by world renowned, Australian-born photographer Anne Geddes. The portrait series celebrates life after meningococcal disease and is a tribute to their courage and hope for the future.
RHAINER AND SKYLAR’S STORY
What started as a fun day exploring Katherine Gorge with their children, quickly turned into every parent’s worst nightmare. “We got home at 2pm. By 5pm Skylar’s temperature spiked to 39°C. At 8pm we changed her nappy, noticed tiny purple bruises on her bottom and then rushed her to hospital. By 8:30pm she was in resuscitation. At 11:30pm we lost her,” Sally recalls.
"We now know meningococcal disease is rare and while most survive, some may face loss. None of us could comprehend Skylar was gone. Every morning and night, Rhainer and her brother, Navaro, blow kisses to the sky and say, ‘we miss you Skylar.”
Before Skylar’s illness the family knew nothing of the disease. “It’s now a part of our lives. We’ll continue to raise awareness forever in the hope we can prevent another family from experiencing loss,” Sally said.
GREATER AWARENESS AND UNDERSTANDING
Anne Geddes, known for her iconic images of children, became a global ambassador for meningococcal disease after witnessing a devastating outbreak in New Zealand while living there with her young family. She recently spent time in Australia photographing seven Australians whose lives have been forever changed by meningococcal disease.
Anne said, “Rhainer’s portrait is a poignant and simple image of a beautiful little girl sitting on her own with an empty space next to her. On the one hand, this image portrays great loss. But as I took the photo, there was an enchanting sense that Rhainer was not alone - that she is part of something bigger.”
“We need greater awareness of meningococcal disease and prevention options. Hopefully if Australians have a better understanding, no one will experience the loss of a loved one or the lifelong impact of the disease. Out of tragedy or by overcoming adversity, the individuals portrayed in I Won’t Give Up have created something beautiful,” Anne said.
In sharing Skylar’s story, Sally wants Australians to be more aware about meningococcal disease and go talk to their doctor for more information about the disease and how to help protect their family.