kids

"Last year a brain eating amoeba rapidly stole the life of my one-year-old son."

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.

Jodi with Cash. Image supplied.

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.

Jodi, her husband their three children. Image supplied.

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.

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Last Christmas we gave our children a special present that was as much a gift to us as them. We wanted somewhere we felt safe for our kids to learn how to swim and have fun in water and researched an affordable above ground pool. It proved to be a small price to pay since now we have the comfort that our young girls can swim independently. It also created loads of fun in time to help survive the challenge that special family day presented.

Since losing Cash, people have asked, “How do you cope?” Mostly I say, "I have to".  I lost my perfect boy, but I still have beautiful girls to love and raise with Laine. They count on me and I know I have to lead them through life by example. I also believe if anything, I should ‘do’ life better, make every day count in my life because Cash had his bright future stolen from him. I feel I should live for myself and for my son. That’s the least I can do for him.

"I lost my perfect boy, but I still have beautiful girls to love and raise." Image supplied.

Most of the time I still can’t believe that this ‘story’ is my story. For our daughters’ sake and for ours, Cash is very much still a part of our life.  He is spoken of everyday, his photos brighten our walls, his sisters sing songs about him and his clothes are still in his cupboard that he now shares with his new little sister Kennedi.

In remembering funny stories about him we try to hold back the tears and laugh with the girls.

We focused more on celebrating Cash’s 2nd birthday than the anniversary of his passing this year, as the day he came into our life was the day life became more special.  We appropriately had a big ‘Cheeky Monkey’ cake and shared a morning with family and friends, creating a bit of fun as we would if he was physically with us. His big sisters were excited for days leading up to his birthday and that’s the way I like it.

Jodi and her family celebrated Cash's 2nd birthday together. Image supplied.

We don’t want other parents to celebrate their child’s birthday without them there to blow out their candles. Statistically we know that children are at a greater risk of being infected by Naegleria fowleri and no parent should ever lose a child and my heart goes out to all those who have. While we are relieved that there has been no other reported cases of people dying from PAM in Australia since Cash’s passing, sadly we have seen reported cases of adults dying from this disease overseas.

So while it is tough retelling our story and I am exhausted, with summers’ heat upon us we want the message of awareness fresh in the minds of all Australians.

Tonight on the ABC’s Australian Story we relive parts of our horrific experience to remind those of the reality of this fatal disease and the simple preventive methods that may save the life of someone you love.

Enjoy meeting the special little man who chose me to be his mum… how lucky am I.

Visit the Facebook page for Lincoln Cash here.

‘Out of the water’ airs tonight on ABC TV at 8pm.

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