Saving my sisters life... - Fundraiser for 5yr Lilis overseas treatment

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Trendsetter

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This has to be one of the hardest things I've ever done. It's taken me a couple of days to finally put my pride aside and ask for help, even though TK is my second home and we're all part of a very dysfunctional family.

I guess it's a mixture of never needing help from anyone before and the fact that I have to speak about it now just makes it even more real. But seeing my wife take charge and put her pride aside to seek help in raising the funds needed has given me the strength emotionally to speak about it and follow her lead.

I'll try and make it as short as possible, from the age of one and a half we noticed something wasn't quite normal with my sister, Lili, she had problems walking, issues with her balance, her eyes would roll back constantly, she would have headaches all the time, she'd scream in pain out of nowhere and wake up numerous times every single night screaming and crying from nightmares.

She was referred to a specialist, and for well over a year she was misdiagnosed with numerous amounts of diseases and disorders from MS to Cerebral Palsy and everything in between. She was put on so many medications and had to endure countless treatments and tests only to find out in the end that it was all for nothing.
My mother asked many times for the specialist to send her for an MRI, even the family GP advised the specialist to send Lili for one, to no avail. Eventually my mother had no choice but to see another specialist, fortunately he was very quick to send Lili for one.

Midway through the MRI my mother was advised to rush my sister to the Sydney Children's in Randwick were the doctors would be waiting for her arrival.

Turns out my little princess has Brainstem Glioma, which is a tumour growing on her brain stem.
Our worlds crumbled at that point. Few days had passed, the doctors came back and gave us the news that Lili would be lucky to have a 5% survival rate.. They performed radiotherapy which meant she had to stay in hospital for a few weeks to basically wait to see if she would survive or not.
Being the little soldier she is, she pulled through and the tumour had shrunk by about a millimeter, which was a good sign.

Lili's now reached 5 years old, something they told us would probably not happen when she was initially diagnosed. But unfortunately, last week she collapsed a few times losing balance which was followed by losing the use of her legs.
She was rushed back to the hospital and examined, tests came back and the tumour is now growing to the right side.

We're now back where we started. This time though, we haven't been given many options.
There's one neurosurgeon that can perform the only operation that gives her a chance at life.
So we've been in contact with the hospital in Germany where the neurosurgeon works, and they're optimistic about the operation as they've already done it on other children with an excellent success rate.

The only obstacle now is coming up with the money to pay for it. Now like I mentioned at the start of this, I've never been one to seek help, but in the end, Lili is my heart and soul, pride means nothing if I were to lose her.

I ask for one thing though, whether or not you can help us, I want every single parent/guardian who reads this, to always get a second opinion if you ever doubt your doctor.
Young kids can't tell us exactly what's wrong with them, we put our trust in doctors to tell us.

My sisters specialist thought it was unnecessary to do an MRI because the tests are expensive. Apparently our kids come with price tags when it comes to healthcare, unless they can be used as guinea pigs to trial drugs for diseases they don't even have.

I don't want to see this ever happen to another child.

gofund.me/SaveLilisLife
 

Rottie

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So sad, brought a couple tears to my eye, i hope you and your family pull through this. Stay strong bro
We're here for you , watch the kennel light it up
 

Hacky McAxe

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Sorry to hear mate. Really bloody tough thing to go through. I'm happy to help out where I can and I'm sure many others will too.
 

dogkat

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Dr Charlie Teo can't help? I know he's very expensive too, but at least he's local. And he has worked miracles.

Stay strong, and will donate after work.
 

Indiandog

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So sad to hear your story bro.

poor little girl, i will chip in too, praying for your sisters quick recovery.
 

Trendsetter

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I really didn't know what to expect when I posted this. What I knew without a doubt though, no matter how much we all disagree and bicker, when one of us needs a helping hand or someone to talk to, TK never disappoints.
Your all truly amazing people.
I've been in my own world for a while now, keeping my distance from everyone and just dwelling in my own solitude trying to come to grips with everything, TK has been the only place I could come and feel like everything was normal.
I can't thank you all enough.

Dr Charlie Teo can't help? I know he's very expensive too, but at least he's local. And he has worked miracles.

Stay strong, and will donate after work.
We've been in contact with Charlie, spoke to him yesterday and unfortunately he's unable to help.
I have to admit, it did lift our spirits up a bit when my parents met with him and he agreed to look over Lili's scans. I guess it just wasn't meant to be..
 

south of heaven

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I really didn't know what to expect when I posted this. What I knew without a doubt though, no matter how much we all disagree and bicker, when one of us needs a helping hand or someone to talk to, TK never disappoints.
Your all truly amazing people.
I've been in my own world for a while now, keeping my distance from everyone and just dwelling in my own solitude trying to come to grips with everything, TK has been the only place I could come and feel like everything was normal.
I can't thank you all enough.


I think ye olde kennel can come up with something to get the ball rolling will keep donating whenever i can .
Its also important your well being brother ,i could only imagine the stress and worry would be untold .make sure you are looking after yourself also .
 

The DoggFather

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I'll be praying for the little princess and your family brother, I just donated now and again in two weeks if that's ok.

God give her strength.
 
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Sorry to hear bro hope you and your family get through this and get all the help you need.
I will make a donation hope it helps.
 

Trendsetter

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I'll be praying for the little princess and your family brother, I'll donate now and again in two weeks if that's ok.

God give her strength.
Of course that's ok, I really can't thankyou all enough.

To be honest, I don't even want to say "thankyou" because it doesn't come close to expressing the appreciation that me and my family have for every single person who donates and prays for her.
Times like this, there truly is no words to describe the appreciation we have for all the support we've received. If there were any tears left, I'd be crying from the joy you all bring me.
 

The DoggFather

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Of course that's ok, I really can't thankyou all enough.

To be honest, I don't even want to say "thankyou" because it doesn't come close to expressing the appreciation that me and my family have for every single person who donates and prays for her.
Times like this, there truly is no words to describe the appreciation we have for all the support we've received. If there were any tears left, I'd be crying from the joy you all bring me.
This is why I love the kennel brother, we may argue and fight over stupid things but we come together as a family to help as much as we can.
 

Nano

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Allah help her and give patience to your family my brother.

I'll make dua and keep her in our prayers, once I am okay after my surgery and the family is okay after our ordeal we will donate to help.
 

Indiandog

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Allah help her and give patience to your family my brother.

I'll make dua and keep her in our prayers, once I am okay after my surgery and the family is okay after our ordeal we will donate to help.

bro the surgery is on your knees which you mentioned sometime ago?
 

Nano

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bro the surgery is on your knees which you mentioned sometime ago?
Yeah bro finally got my knee repaired a few days ago, a lot of pain and struggle but there are things going on which are much worse so I can't complain over it.
 

Mr Invisible

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Hey Trendsetter,

All Donation threads now need to be approved by 2 members of the mod team, but I'll have another mod cross verify this one ASAP (it's to protect the Kennel against scams - not that this is one but just to explain).

Stuff like this is heartbreaking and even worse when children are involved. Sadly modern technology can answer many questions and solve many issues, but there still remains complex issues like this which happen to even the best of people.

Really sorry to read this, and read that Charlie Teo is unable to help (he recently helped @jimmypop out from memory). Sounds like its impacting the Circle of Willis, in which case they can radiate, but it's a very tricky area to operate on.

Have you tried reaching out to Icon Cancer Care in Brisbane, or Peter MacCallum Cancer Centre in Melb. Both are leading significant studies into cancer research and Peter Mac recently had breakthroughs with acute myeloid (from memory).

Have they cleared her to fly if the funds can be raised, or for that matter is there any way to fly the specialist to Australia and have him operate out here?

Things are really tight for us at the moment, but let me see what I can do towards this cause.

All the very best with this one... and hoping for a favourable outcome..

.... Thoughts are with family and friends..
 
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