This weekend in an all too familiar area of a hospital room, I comfort two of my children who are unwell with fevers soaring near 40 degrees. My rational thought process is saying “it’s okay, their symptoms are common to viruses known to the medical team”.
The heartbroken mother in me says “don’t be complacent” and contemplates whether either one of my sick children are at the beginning of a fatal road, possibly the same road that ended with the death of my beautiful baby boy.
Last year a brain eating amoeba called Naegleria fowleri rapidly stole the life of my one-year-old son Lincoln Cash, known to all of his family and friends as Cash. One day my cheeky monkey was laughing and pulling his big sisters’ hair, the next he was vomiting and having seizures. Four days later his life was stripped away from him.
This aggressive amoeba causes the rare and fatal disease Primary Amoebic Meningoencephalitis (P.A.M.), which has a near to 99% mortality rate. A disease many Australians are unknowingly exposed to on a daily basis.
Sadly, I am now very knowledgeable about this disease. Naegleria fowleri lives in warm, untreated, fresh water and in our case was thriving in our home’s bore water supply in rural North West Queensland. Only when water containing this bug forcibly travels up the nasal passage can a person be infected. Common symptoms following infection include fevers, headaches, a stiff neck, nausea, vomiting, and hallucinations.
Discovering through our own tragic loss that there was a complete lack of awareness and knowledge of this disease in Australia, including in the medical field, I immediately started working on the development of an awareness campaign - Lincoln Cash ‘Fresh Water for Life’. It’s been a year since I launched the campaign, and now with temperatures soaring we retell our story to empower people with knowledge. The key message being: Prevention is paramount as there are no proven effective treatments for P.A.M.
Following the traumatic loss of our baby boy we returned to Judith Royl Station; our home, and now knowingly also the home to this deadly parasite. We have tried to create a safer environment for our children by implementing the recommended filtration system combined with UV light and avoiding water activities which may result in water going up the nose.
But even with preventative methods in place, I still felt utter dread when our five-year-old daughter Kodi-Laine told us that her four-year-old sister Bobbi sprayed water up her nose with a hose. We waited and watched each day knowing that the symptoms are most likely to present within seven days. When one of our children is unwell, particularly if they have a temperature or are vomiting, we find ourselves retracing our steps in our mind, questioning their exposure to the water. Once I took my sick son to hospital without a faintest thought that he may die. But the unimaginable happened and now anything seems possible.
This past week, my husband Laine and I stood in the hospital room with two of our girls. Both children presented different symptoms, but some of the symptoms were common in the early stages of infection by Naegleria fowleri. While trying to be rational, we questioned whether it could all be happening again or whether there was another deadly disease the medical world isn’t broadly aware of. After a couple of days in hospital and a test for our heads and hearts, with relief we took our girls home.