Young fisherman dies suddenly

[warrigul]

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 ½ 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.

[Funchy]

What a noble thing you are doing mate! I have 4 kids, thanks for making me aware. All the very best.

[CruiserV8100]

Posted the link on my friends FB pages to share your story.

[Crunchy]

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.

[snapperdan]

So very sorry for your loss. I m trying to write something more meaningful but im in tears from that.

Thank you for making us aware of what your little trooper went through and how we can help.

[Tovo64]

It's a very noble thing you are doing, helping others after suffering a loss that no parent wants to contemplate. Thank you.

[dnej]

Thank you so much for this post.May I say I am sorry for your loss.

I have only been a grandad for 8 months, and I will now be able to let my daughter know about this.
Your story will help us all.
David

[Mr Squiggles]

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

[royslaven]

Wow, our thoughts are with you and your family, regards, roy

[Todddo]

Thanks so much for posting this and our thoughts are with your family.
Teared up reading this, Nobody wants to hear of a family losing a child.

[Boab Bribie]

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.

[TREVELLY]

We all feel for you and for sure I believe nothing can compare to losing your child - a bit teary eyed - sorry for your loss.

Thank you for sharing so others can be made aware - a great cause I hope it become infectious and the problem does not.

[Matt76]

Can't even begin to imagine what you went through. Thank you for sharing, as a father of 4 I am extremely gratefull for the info.

[Greg P]

Heartbreaking story mate. Takes a strong, brave person to do what you are doing.

[Tickleish]

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.

[becka85]

So sorry to hear about your loss,Just heartbreaking will be spreading the word ..Best wishes for your family and yourself

[rexwatto]

If you ever want to sort out some type of fund raiser for research, I'm sure plenty of us Ausfisho's could help (eg a charity fishing day?).

Thank you for sharing - you're a brave man and I wish you and your family all the best.

[warrigul]

Hi guysThank you all very much for the heart felt messages, and thanks for sharing this story to your loved ones and sharing the fb book page.We have lost our boy however, he was not a sick kid and lived pain free, some kids don't get that. So his life was a good one. Although it was shortend, we were lucky to have him for nearly 5 yrs. Some parents don't even get that.The next thing for us is to find the kids in this country, normal looking kids who have these symtoms, who if they miss a meal, (fasting) could be in alot of trouble or it may have fatal results, as it did with tom. He missed the nights before dinner. Thought it best to let him sleep as he was overtired.We have started fund raising and raised $2800 from a raffle with locally donated prizesand paid our public liability insurance, for future fund raising efforts.We have our first attempt at a major fundraiser this May 26th at the Caloundra race track Sunshine Coast.I have the job of getting 250 bums on seats for the 3 coarse meal (including beer, wine and soft drink for 5hrs) and finding sponsors for the 7 races held at the track that day.I have sponsors for 2 races and around 100 people so far, so a bit of work to still do there. Any help in any of these areas would be awesome. Any thing we could raffle will also help raise funds.As far as a fishing day, Why not? I will use every available resource as a weapon to fight back agianst this conditions which kills children so suddenly. Maybe a kids orientated fishing day along the pumicestone passage so it removes the weather element out of it. Heaps of parks and bbqs along golden beach?I have put together a strong team of 7 good people for the board and we have outlined a 4 pronged approach for awarness. I hope to raise $30,000 this year which i know is alot, but we are having a crack.We need to shine a spot light on this killer hiding in the shadows of obscurity.Big thanks to the Ausfish owner and mods for allowing this thread.A big thanks to you all again.Andy

[Back In Black]

"Fishing For Tom Day" has a ring about it Andy.

With over 5500 hits on Ausfish in 2 days, there would be huge support for a fund raising fishing day.

You'd have no problems getting sponsors as well, as this topic has obviously touched so many people.

All the best with your quest, & know the Ausfish family will be right behind you.

Tony

[Ausfish]

Andy, sorry for your loss, let me know if there is anything I can do. Send a PM would be best.

[warrigul]

"KIDS OF AUSFISH FISHING DAY"
Proceeds of the day goes to a said charity.This could work.
Getting ready for work for the day hence time of post will give this more thought. To be continued.
Andy

[ranga7]

Gee Andy so sorry mate, wat a little champion, got a 4 year old myself, all the best to you and your family.

cheers Ranga

[Smithy]

Andy, I must have caught the story in the daily one time and now I don't use the ramp anymore and live south of the river so don't go to Fisherman's Rd anymore I haven't had a chance to talk to you personally. Jules was gutted for you too when I told her what I had read. Now you've made it public here it is appropriate to say something and we feel for you mate. Todd too as we saw your trailer at the ramp a few times when I was fishing with him out of Caloundra and we had talked about it as well.

[JEWIENEWIE]

Warrigul,
Just read your post and after holding back my tears my heart has just about stopped. My 3.5yr old boy hs been complaining about sore legs and knees for a while now. He will be riding his bike good as gold one minute then complaining of sore legs, knees, next minute then back on his bike. No real pattern to it. Been to doctor once and was told his legs are growing very quickly and the pain is coming from loose knee ligaments ..... growing pains. I have been a bit worried about this but didnt think much of it until NOW !!
I am calling my wife this very minute to get him to the Doctor ASAP to mentioned this condition. Your a very courageous man to be able to deal with your boys death like this, dealing with it every day as some people would like to probably not have to talk about a situation like that again, but you talk about it daily and ARE making a difference. My heart goes out to your family, i can not fathom how i would move on if i was in your shoes. I thank you so much for sharing your story, making myself aware of this condition, and your little Toms life is still giving to people he deosnt even know....I am afraid to say it but from what you have described symptom wise i am very concerned and afraid for my boy....
JN

[warrigul]

JN
pm's recieved and replied to, all the best for today mate.
Andy

[JEWIENEWIE]

Thanks Andy,
Nervous yeah mate, got a good doctor, will see how he goes. As mentioned in pm, Jethro woke last night with the problem so hopeing we can get the test done asap or if we have to wait for another episode as to get tests done. Every chance that it is not what we think but very concerning and want to rule this out as symptons fit....
Matty

[Mr Squiggles]

Matty
Thoughts are with you & yours as I'm sure every Ausfishers thoughts will be!
Steve

[JEWIENEWIE]

Well,
Doctor has taking this seriously as some symptoms fit the bill. He has given us an emergency plan in case he has the condition. He is doing more research before starting some tests probably on Monday. He wants to test Jethro for several things at once as to not stress him out to much in doing several tests on different days. A positive sign is that because this is genetic and my 8yr old has no signs of this condition, it is a good sign. Going to take the Faimily up the beach fishing this weekend for a bit of a distraction till we get some answers....
JN