Help me stop this from happening again.This is a warning to fellow Ausfishers about something that killed my son, Tom, 4 years 10 months old. He was the first recorded case in Australia at that time (More have now been discovered).He woke up complaining of a sore knee, ate breakfast, and was dead 2 ˝ hours later on 25 August 2010. The hunt for answers finished in France with the detection of a gene problem (mutation) that came from his mum and me.The cause of death to this healthy 4 year old keen fisherman was “severe” rhabdomyolysis (skeletal muscle breakdown) poisoning his blood causing a heart attack. Yup, I had never heard that word before in my life either.The warning signs – as I know there are more kids in Australia, walking around undetected. Tom would one day out of the blue complain his legs were sore, and couldn’t walk, which was weird as he had been walking fine for the past 3 years.One day of not being able to walk, then fine the next day, riding his bike no worries. He leaked wee in his pants, seemingly unknown to him as he was toilet trained. It had a bad smell - a bit like a burnt clutch combined with a grass fire smell. During an episode he had red/brown urine which we saw several times – it is discoloured not from blood, but from broken down muscle tissue, known as myoglobin.Mum knew something was not right with our boy, but the doctors, paediatricians, hospitals we took him to never took it seriously. We may have lost that fight but we plan to win the war. We have started a world first awareness campaign about the gene (LPIN1) causing severe rhabdomyolysis and have registered the Shine for Thomas Foundation, in memory of my Tom Olive and Tom Dean (dying 20 hours apart). I am using the power of Ausfish to help save our kids. Spread the message please. Tom was the first detected but two others were detected within the same month. 8 year old boy from Port Macquarie died and 3 year old Victorian boy who is still alive. This is treatable, preventable and detectable and the warning signs are quite obvious to the good doctors.Like outboard mechanics, the good ones are sometimes hard to find.Don’t hesitate to post any questions, or join our LPIN1 awareness and support group on facebook.
It must be very difficult to recount that story, it was tough enough reading it. It's a very brave thing you are doing and I wish you every success in your mission to raise awareness of this issue.....all the best mate.
Whew!! Took me a while to be able to reply after reading that!! As stated, very brave of you. Thank you very much. I've quite a few young families I'm sending this to.
Steve
Wow what can I can say, I am like the other posts took awhile to get my shit together to type. I have a 4 year old girl myself and could not imagine what you went throu. I will try and get it linked to our FB page for awareness.
Just read this, Its the saddest thing reading than looking at the pics of the little Fella & Dad with the bream.
I've got a 4 year old boy and have similar photo's and know how proud you are when thy catch their first fish.
You should be very proud of him he looked like great young bloke who suffered for others to be now aware of this terribly gene. I will do all I can to spread the word of your young man to all friends and family and hopefully his sacrifice can save other children.
I'm so sorry to hear of your loss, best wishes for you and your family in the future.
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