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
