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

Thorn, 19, from Coffs Harbour, 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.

At seven months old, Thorn’s mum, Kylie, noticed he was restless, squinting at the light and had a small rash. She took him to their GP and was immediately sent to the hospital. In under 12 hours, Thorn had multi-organ failure and remained in the ICU for four weeks.

Thorn was released from hospital three months later with multiple skin grafts, ongoing seizures and a feeding tube. His kidneys never recovered.

Today, Thorn 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.

THORN’S STORY OF SURVIVAL

Thorn required Kylie’s constant care from the moment he came home from hospital. For 10 years, Thorn and Kylie spent six to eight months of each year in hospital. Their local hospital didn’t have the appropriate paediatric facilities for his needs so Kylie and Thorn would spend six to eight hours travelling 600km each way to a Sydney hospital. Kylie recalls, “I had to give everything up. We practically lived at the hospital, it was just too hard.”

At eight years of age Thorn started dialysis,10 hours per day, seven days a week for 14 months. At the age of 10, Thorn had a kidney transplant. His poor health had a tremendous impact on his psychological well-being and ability to learn.

Through his courage and perseverance, Thorn in now studying Animal Studies part-time at TAFE. “In surviving meningococcal disease and living with what it has done to me, I have learnt to be myself, to not be afraid to ask for anything and most of all not to be ashamed of my disability. This has given me my sense of strength,” Thorn 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.

“Thorn is a remarkable young man. He was determined to portray strength. I struggle to find the words to describe his courage. What a privilege to photograph him,” she 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 their story, Thorn and Kylie want 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.