Its come a time to share the truth I am baring my heart on my sleeve For all or nothing I have beat all odds more times than I can remember For more years than in a decade I have had more questionable days than most I have struggled and yet I haven't shown it I accepted my fate But in order to take charge of my life I am going to share my story Break down my feelings Prove that everything happens for a reason You only get given what God knows you can handle And its time I tell you the good and the bad I have been battling an extremely rare disease since I was 15 years old It changed my world It gave me a chance A chance to be wiser than my years To live for the moment Live for the day Every day for over 11 years I have lived in chronic pain You would never know My smile is strong I lived in fear But you would never know I stand brave But as I get older and the countless hospital stays increase It has truly been essential for me to work even harder I'm not invincible My health is temperamental But I'm going to choose to live a lot more visible If you are sick I want you to know you are not alone If the one you love is sick I want you to know you are not alone When it gets hard I won't lie and say it can't get harder But I can strongly tell you if you don't give up today Than you should smile Push your limits and don't take the words no or never You were built for this and you were built to over come this I am no trained professional and what I write is as raw as it could be I can only hope that in some way this blog helps someone If you are looking for answers If you are looking for hope If you are lost and need a torch If you have prayed your last prayer If you have cried your last tear Lets find a way Let's do it together For a purpose
AliVeMiss.com
AliVeMiss.com 
Hi thanks for sharing , Good to see my son isn’t the only one with this condition.
My son was diagnosed at 2.5 years with an avm in his spine that was twisted around his spine and nerves.
He 4 embolizations, he’s lasted 10 years on gabapenten and yearly MRI and medicals from his neuro surgeon.
A moth ago he woke up and couldn’t walk and we’ve been at the royal childrens ever since.
The surgeon said there is no cure and surgery could paralyze him and leave him in more pain than he’s in now.
Its so sad and really would’ve thought that 10 years on they would have found a cure…
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Hi Phil, oh I know exactly the feeling it is extremely difficult! We have definitely been put on this earth with a heavy burden.. I’ve been living with chronic pain for 13years, since I first was aware of my AVM when it first haemorrhaged when I was 14. I’ve been in hospital 15times, learn’t how to walk 13 times I’ve been paralysed 3 times I’ve had two separate haemorrhages and a stroke. But please don’t worry what the doctors tell you just believe in the power of your sons fighting heart! I was quadriplegic last November and I was prepared with my motor chair for a life disabled, but I never gave up and I worked everyday and I walked out of there, your son will do the some!❤️ I did Cyberknife radiation therapy 10years ago in the US and it unfortunately didn’t work for me and I can’t do any treatment at all now.. I found out 6months ago my AVM now has numerous aneurysms inside it and I can’t treat them at all either.. everyday is a risk and fight. But for some reason God still has us on this earth so don’t worry your son is going to be alright he has a true purpose. Sometimes I just think the AVM must be there for a reason and I do think it is extremely scary touching it when it can maybe wake the beast. Just never give up and be grateful for everyday like I’m sure you are!❤️ sending much love! positive vibes! and my fighting spirit! I’ll pray for your son and your family.
all the very best Phil xox
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Thank you so much for sharing that with me. I see there is some possitves that surgeons just are not god!
You are so so strong to come back from paralyzed to being to walk again.
Is your avm wrapped around your spinal cord and nerves also ?
Reading your story is great as in australia there is no research on spinal AVMs and no money goes towards research.
The children’s hospital is great but it’s just a guessing game how they treat my son. As they have never dealt with spinAl AVMs before.
At the moment he’s just started rehab and coming of steroid treatment so he’s very very sore and some tines he’s screaming in pain.
They are trying to maintain the pain at this point and try to get him walking agsun.
Wish there was a way to have more research here in Australia.
We looked at lasor in the US but they said it’s top risky ..
And I just want my boy back happy and home again it’s so hard and sad
Your so strong to not let it beat you I hope one day there is a cure for you and my son
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Oh I totally feel for you guys, this is definitely going to test you emotionally and I feel for the pain your boy is going through right now.. please go see my Neurosurgeon Dr Richard Parksion at Saint Vincent’s Hospital, he is amazing and a beautiful soul he will help you guys. I wouldn’t trust anyone but him. He told me about Cyberknife in the US and the government funded me to go it was more than $250,000 if I was to go again it would be more than $300,000. It didn’t work for me but I was the 21st person to do it in the world just over 10years ago. Go see him and he will help you anyway he possibly can! I also see Dr Shaun Watson at Prince of Wales hospital he is my neurologist and he also is very good. You will be in safe and good hands tell them my name Marissa Mellick, they know me very well.
My spinal AVM is on the base of my brain in C1,C2,C3 and it goes through surrounding nerves, arteries, veins and muscle tissue. It also goes through my spinal cord, it’s unfortunately very large.
Thank you for your positive words, don’t worry I hit very low points and it is extremely hard, you have to just be sad some days and that’s ok. Please let me know if you guys need any help! I have built up some amazing contacts and learnt a lot in these 13years so I can help lead you guys in the right direction. Whether it’s about treatment, medication or rehabilitation, please don’t be shy to send me a message.
Your not alone, sending a blue heart for you boy! 💙 🙏 xox
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Thanks Marrisa
That would be great! Would appreciate all the help can get. Feeling completely lost and helpless at the moment. Watching my boy scream in pain then having to Drug him up to ease the pain is hell.
His on 600 gm of gabependen at the moment and endone and targen and other morphenes.
Seems like no surgeon at the royal childrens in melbourne really knows how to deal with him…
Thank you for sharing
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