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AVM Survivors Network

Jack Ottens undergoes last hope treatment for a cure for his brain condition,

Fingers crossed we got it this time!

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Christine,

I hope so!

Great article! Jack looks nicely relaxed in the picture with a lady (you?). And it’s sobering to realise how beneficial free medicine is in the UK compared to the clear sacrifices you guys are making.

Hats off and very best wishes for the next 2 years!

Richard

Praying that the procedure is going to get rid of it.

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Wishing you good luck. Go Jack!

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Thanks Melissa. If he’d had this form of radiation the first time the risk of left side paralysis wouldn’t be there. It wasn’t easy to do the story but we are trying to raise awareness of this particular treatment which is only available in two hospitals in my country and that few doctors know about.

Thank you MJO. I really believe it’s going to work but then it has to.

Hi Dick. I hope so too and yes that’s me. This sedentary lifestyle isn’t not great for the weight lol. The reporters did a good job and I guess I was a little emotional because Jack was having the radiation at the same time as I was doing my interview. We generally have a pretty good medical system here but it doesn’t cover everything, there’s almost always some out of pocket with specialists, and anything that is classed as an unusual treatment is not usually covered or fully covered. $30-$50k a year, year on year for 7 years our debt has risen. Every time we manage to pay it down something else happens with Jack and it goes right back up again.

He has his first follow up scan in 3 months which can be done in Melbourne and the disc sent to Sydney to save us having to make another trip. Hoping there’ll be some changes already but there should be something noticeable in a year.

Sadly they found a bit more AVM, not a lot but it means it’s still growing. Hoping the radiation can stop the spread right away.

There’ll be more articles to come. Shall I post them? We should have a media topic - maybe called spreading the word.

I think articles and awareness are great. Formally, Ben’s Friends only supports one AVM awareness fund but to share info as long as it isn’t for fundraising I think would be fab.

Thanks for sharing the article above and for telling us about Jack.

Wishing you all all the best,

Richard

3 posts were split to a new topic: Jack Progress, Articles and Funding

Jack is doing really well and this morning I’ve been telling him he has to start getting back to exercising and doing some study. We’ll grade it up slowly as I don’t want to overwhelm him as he went down such a long way during this process and it’s going to take a while to build him back up to the best he can be, but it’s time he got back to living.
First scan in 3 months but we may not see any changes until a year.

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Starting him back at school today. Just for an hour but he’s excited :slight_smile:

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Dick I responded incorrectly in regards to your comment on the picture. In the picture that you are referring to Jack wasn’t just relaxed, he was non-responsive. He was dying at the time. The “lady” is my other son who was 11 at the time and he was saying goodbye to his little brother. We took it because we thought it was the last time the boys would ever be together. Immediately following this pic Jack was moved to another room where something was injected to ease some of the pressure in his brain that was shutting his body down, he was intubated and then loaded into an ambulance for a trip to another hospital for emergency surgery with the head of the emergency department along for the ride as they thought he was going to start to pass again. It looks peaceful but there was a hotline of calls going between three hospitals, surgeons being called in from all over and it was panic stations wherever we were this day. About as big an emergency as you can get. I’ve never seen anything to compare on any tv show or movie. It was INTENSE!!!

Gosh to all of that!

And I’ve clearly got worse eyesight than I thought!

lol I could see how you could get it wrong. All I can say is it’s NEVER boring around my place! I WISH for some boring lol.

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Hi Christine, I read about your son Jack and wondered how he is getting in now nearly two years after his Gamma Knife. I had my GK last July after one bleed.
Wishing you all the best,
Jonny