I won’t give up | Life after meningococcal disease

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 die^2,3 and around one in five may suffer serious long-term disabilities including brain damage, deafness or loss of limbs²

Seven-year-old Jazmyn from Renmark 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 2015, three-year-old Jazmyn woke one evening with a fever, which her parents thought was the flu. The next morning Jazmyn’s mum, Sarah, took her to their doctor who immediately sent them to the local hospital. With purple bruises and dark spots spreading over her body, Jazmyn was air lifted to the major children’s hospital for urgent care.

Now four years later, Jazmyn 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.

JAZMYN’S STORY OF SURVIVAL

Jazmyn was in intensive care for five days and in hospital for five weeks, undergoing 15 painful skin grafts. “In the last year, she’s had scar release surgery on her leg, a procedure that removes scar tissue to release the skin tightness. Her legs and feet hurt every day and she experiences debilitating headaches,” Sarah said.

At times, the family have found it hard to cope with the ongoing effects of meningococcal disease on Jazmyn’s health. Living in Renmark means Sarah and Jazmyn must travel for three hours to Adelaide for hospital appointments, and Jazmyn’s sisters miss them when they’re away from home for long periods of time.

Sarah says Jazmyn’s confidence has increased since being part of the I Won’t Give Up series, and her strength and fierce determination will serve her well into the future. “We hope her story will inspire others and that whatever the outcome, there’s great possibility and joy to simply survive.”

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.

“When I spoke to Sarah from New York, she mentioned Jazmyn is conscious of her legs and wants to look like other girls. I wanted her feel like a little princess, to echo what her parents tell her that she is beautiful, and her scars tell her story of her courage to fight the infection and survive,” Anne said.

“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 Jazmyn’s story, Sarah 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.