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

[Papa Emeritus]

Heartbreaking, wish we could do something

Try to stay strong TS.

 

[The DoggFather]

Honestly would give this heart back to help our Princess. God loves her and will come through for her.

I wish her and your family nothing but the best.

Stay strong brother

 

[Trendsetter]

I want to thank you all for the heart warming posts.

Lili stopped breathing 2 days ago. My mother performed cpr till the paramedics arrived and shes been in hospital ever since.
They're keeping her there for a few days to monitor her breathing and her heart rate as it keeps dropping to dangerous levels, but as much as they try to sugarcoat it, I know we're not very far from the end.
They've already informed us they won't be placing a tube down her throat to help her breathe as they'll have to sedate her and once that happens, there's very little chance she'll be able to breath on her own. So in other words, when she gets to the point of not being able to breathe on her own or her heart finally gives up....

I'm not exactly sure what to say from here. There's not much that can be said to help comfort me or my family, but I'm trying ever so hard to find solace in knowing that eventually this pain may subside and I'll have fond memories of the smartest, brightest and most adorable child I ever had the privilege of meeting in my life.

I don't know what's harder, knowing she's nearing the end of her short beautiful life or watching her suffer everyday.

I only hope none of you ever have to watch a child suffer, life loses all meaning and it seems there's no coming back from that.

 

[Mr Invisible]

Not much else I can offer in words of future sympathy, and an offer to chat whenever you need it either on PM, or here.

I am so sorry mate

Remember not the life that was lost, but the person that was loved, and how they loved.
Remember not the beginning of the end, but all the good times in between aka "the smartest, brightest and most adorable child you ever had the privilege of meeting".

When my grandmother passed away suddenly from a massive stroke a few years back, I refused to see her in hospital (she was in an induced coma with less than 1% chance of pulling through). From all accounts "the end stage" was not pretty at all. I wanted to remember her like I had last seen her, not like she was like on her deaths bed.

I know my Nan will never come back, and whilst it might sound strange, I know she is still "with me" when I need her (I have seen her once post death).

I say this because you have a choice to make and NOBODY will begrudge you if you decide to (do the same and) remember her like you last saw her.


Only solace I can offer, is do something in her honor when the time comes.... something that would make her happy. Take up flying a kite, or build a memorial garden, something that will remind you of her.

You take care of yourself, and your family.....

 

[Mr 95%]

I want to thank you all for the heart warming posts.

Lili stopped breathing 2 days ago. My mother performed cpr till the paramedics arrived and shes been in hospital ever since.
They're keeping her there for a few days to monitor her breathing and her heart rate as it keeps dropping to dangerous levels, but as much as they try to sugarcoat it, I know we're not very far from the end.
They've already informed us they won't be placing a tube down her throat to help her breathe as they'll have to sedate her and once that happens, there's very little chance she'll be able to breath on her own. So in other words, when she gets to the point of not being able to breathe on her own or her heart finally gives up....

I'm not exactly sure what to say from here. There's not much that can be said to help comfort me or my family, but I'm trying ever so hard to find solace in knowing that eventually this pain may subside and I'll have fond memories of the smartest, brightest and most adorable child I ever had the privilege of meeting in my life.

I don't know what's harder, knowing she's nearing the end of her short beautiful life or watching her suffer everyday.

I only hope none of you ever have to watch a child suffer, life loses all meaning and it seems there's no coming back from that.

So sad to hear brother.. My strength to you, your family..and your wonderful sister..

 

[Endeavour]

I am so sorry you have to go through this. I can't imagine what it must be like for you and your family. My thoughts are with you. You know if you feel the need to chat someone will be here. We aren't just saying that we mean it.

 

[The DoggFather]

I want to thank you all for the heart warming posts.

Lili stopped breathing 2 days ago. My mother performed cpr till the paramedics arrived and shes been in hospital ever since.
They're keeping her there for a few days to monitor her breathing and her heart rate as it keeps dropping to dangerous levels, but as much as they try to sugarcoat it, I know we're not very far from the end.
They've already informed us they won't be placing a tube down her throat to help her breathe as they'll have to sedate her and once that happens, there's very little chance she'll be able to breath on her own. So in other words, when she gets to the point of not being able to breathe on her own or her heart finally gives up....

I'm not exactly sure what to say from here. There's not much that can be said to help comfort me or my family, but I'm trying ever so hard to find solace in knowing that eventually this pain may subside and I'll have fond memories of the smartest, brightest and most adorable child I ever had the privilege of meeting in my life.

I don't know what's harder, knowing she's nearing the end of her short beautiful life or watching her suffer everyday.

I only hope none of you ever have to watch a child suffer, life loses all meaning and it seems there's no coming back from that.

I'm shattered brother. All I can say is love you and will support you anyway I can.

We are here if and when you need us.

 

[dogluva]

I want to thank you all for the heart warming posts.

Lili stopped breathing 2 days ago. My mother performed cpr till the paramedics arrived and shes been in hospital ever since.
They're keeping her there for a few days to monitor her breathing and her heart rate as it keeps dropping to dangerous levels, but as much as they try to sugarcoat it, I know we're not very far from the end.
They've already informed us they won't be placing a tube down her throat to help her breathe as they'll have to sedate her and once that happens, there's very little chance she'll be able to breath on her own. So in other words, when she gets to the point of not being able to breathe on her own or her heart finally gives up....

I'm not exactly sure what to say from here. There's not much that can be said to help comfort me or my family, but I'm trying ever so hard to find solace in knowing that eventually this pain may subside and I'll have fond memories of the smartest, brightest and most adorable child I ever had the privilege of meeting in my life.

I don't know what's harder, knowing she's nearing the end of her short beautiful life or watching her suffer everyday.

I only hope none of you ever have to watch a child suffer, life loses all meaning and it seems there's no coming back from that.

My heart aches for you and yours and as Assassin has aptly put it I am shattered for you all .

It is difficult to have anything of real comfort and positivity to say to you at this time. Know though that she has given all she can to this life and she will, when it is time, find the peace and comfort that God has waiting for her.

The following comment from your post says it all and although at this point in time it rings true, time will to a degree help heal the pain you are feeling.

I'm trying ever so hard to find solace in knowing that eventually this pain may subside and I'll have fond memories of the smartest, brightest and most adorable child I ever had the privilege of meeting in my life.

The coming times will be difficult, but try to reflect on those happy days with her; think of her smile, her laughter, all those eccentricities that made Lili her own little person. I see in my mind the picture posted of her with that beautiful smile, that cheekiness that she obviously has, that is what you should remember.

Know we are here for you now and in the future.

 

[Wahesh]

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

So sorry to hear about this mate. We're all thinking of you. Jut remember, God has a plan for everyone and Gods will, WILL be done. It's all in the script. Remember her the way she's want you to, and remember that she'll always be with you and your family wherever you go.

 

[wigum]

I am so sorry to hear that. My deepest condolences to you and your family.

 

[Wolfmother]

There's no words ..there is no greater sadness or helplessness I could ever imagine that would come close to what you're feeling .
I'm still hoping for a miracle x

 

[Trendsetter]

I've started writing this post quite a few times now trying to find the best way to start it....

I'm feeling numb, I feel absolutely nothing at the moment. We've been at the children's hospital since the afternoon, it's now 2am.

They've made Lili as comfortable as possible and told us to just sit by her side.
I've spent the last 12hours going through every emotion just to end up here feeling nothing at all.
I'm watching my sweet girl take the last breaths of her life. They said the process is different for everyone, it could be a few hours... she could battle on for another day, but regardless of time, her body is finally giving in.

She's so peaceful at the moment, I knew this was inevitable, but part of me is relieved to see her so calm and free of pain, even though it means I'm losing part of me.

I don't know if she'll still be with us by the morning or when anyone sees this. I also don't know when I'll be able to get back on and let everyone know the outcome.

I just want everyone to know, your love and kindness gave me that little bit of strength to carry on for a little longer throughout this time and I love you so dearly all for it.

 

[The DoggFather]

I've started writing this post quite a few times now trying to find the best way to start it....

I'm feeling numb, I feel absolutely nothing at the moment. We've been at the children's hospital since the afternoon, it's now 2am.

They've made Lili as comfortable as possible and told us to just sit by her side.
I've spent the last 12hours going through every emotion just to end up here feeling nothing at all.
I'm watching my sweet girl take the last breaths of her life. They said the process is different for everyone, it could be a few hours... she could battle on for another day, but regardless of time, her body is finally giving in.

She's so peaceful at the moment, I knew this was inevitable, but part of me is relieved to see her so calm and free of pain, even though it means I'm losing part of me.

I don't know if she'll still be with us by the morning or when anyone sees this. I also don't know when I'll be able to get back on and let everyone know the outcome.

I just want everyone to know, your love and kindness gave me that little bit of strength to carry on for a little longer throughout this time and I love you so dearly all for it.

God bless her brother. God wants her home already, obviously she is too good for this world.

Our Angel is going to go where we are aiming to be.

Please, these aren't just words, if there is anything that we can do for you, any little thing, please don't hesitate to ask.

Stay strong brother, you don't realise how strong you already are brother. God bless you.

 

[Endeavour]

Oh.....Crying now......

I wish I could come and give you and your family a big hug so I am sending them virtually.

I don't have any words except for to say how sorry I am.

I will be thinking of little Lili today.

 

[Wahesh]

I've started writing this post quite a few times now trying to find the best way to start it....

I'm feeling numb, I feel absolutely nothing at the moment. We've been at the children's hospital since the afternoon, it's now 2am.

They've made Lili as comfortable as possible and told us to just sit by her side.
I've spent the last 12hours going through every emotion just to end up here feeling nothing at all.
I'm watching my sweet girl take the last breaths of her life. They said the process is different for everyone, it could be a few hours... she could battle on for another day, but regardless of time, her body is finally giving in.

She's so peaceful at the moment, I knew this was inevitable, but part of me is relieved to see her so calm and free of pain, even though it means I'm losing part of me.

I don't know if she'll still be with us by the morning or when anyone sees this. I also don't know when I'll be able to get back on and let everyone know the outcome.

I just want everyone to know, your love and kindness gave me that little bit of strength to carry on for a little longer throughout this time and I love you so dearly all for it.

It is absolutely heart breaking to read this brother. We are all thinking of you and praying for you. God wants his angel back. We just need to do us a favor for her - remember Lili the way she would want you to remember her. She will always love you and live within you. Her beautiful, precious face the way you remember it - she will live within you.

Take comfort in knowing, just like all others we've lost along the way on our journey, that we will all be together again one day.

We are all but visitors to this planet on borrowed time - some people stay a little longer than others.

Life isn't about the journey - it's about the destination.

 

[Mr Invisible]

We are all here for you during this difficult time... thoughts are with you and your family.

 

[dogluva]

I've started writing this post quite a few times now trying to find the best way to start it....

I'm feeling numb, I feel absolutely nothing at the moment. We've been at the children's hospital since the afternoon, it's now 2am.

They've made Lili as comfortable as possible and told us to just sit by her side.
I've spent the last 12hours going through every emotion just to end up here feeling nothing at all.
I'm watching my sweet girl take the last breaths of her life. They said the process is different for everyone, it could be a few hours... she could battle on for another day, but regardless of time, her body is finally giving in.

She's so peaceful at the moment, I knew this was inevitable, but part of me is relieved to see her so calm and free of pain, even though it means I'm losing part of me.

I don't know if she'll still be with us by the morning or when anyone sees this. I also don't know when I'll be able to get back on and let everyone know the outcome.

I just want everyone to know, your love and kindness gave me that little bit of strength to carry on for a little longer throughout this time and I love you so dearly all for it.

God bless you all . Peace and love to the little angel who is now inevitably being called home.

Draw strength from her brave fight and know that she will always be in your heart and mind. Remember the good times, the pain free times and rejoice in the life that she shared with you, albeit fleeting. Hold her hand, talk to her and let her know that she has been and always will be loved. My heart breaks for you.

 

[Mr 95%]

I've started writing this post quite a few times now trying to find the best way to start it....

I'm feeling numb, I feel absolutely nothing at the moment. We've been at the children's hospital since the afternoon, it's now 2am.

They've made Lili as comfortable as possible and told us to just sit by her side.
I've spent the last 12hours going through every emotion just to end up here feeling nothing at all.
I'm watching my sweet girl take the last breaths of her life. They said the process is different for everyone, it could be a few hours... she could battle on for another day, but regardless of time, her body is finally giving in.

She's so peaceful at the moment, I knew this was inevitable, but part of me is relieved to see her so calm and free of pain, even though it means I'm losing part of me.

I don't know if she'll still be with us by the morning or when anyone sees this. I also don't know when I'll be able to get back on and let everyone know the outcome.

I just want everyone to know, your love and kindness gave me that little bit of strength to carry on for a little longer throughout this time and I love you so dearly all for it.

Ah bro I'm so sorry to hear..I really am.. Such a brave brave fighter Lili is.. I send all my strength to you, your family, and to Lili..

 

[Wolfmother]

Trendsetter thank you for thinking of us.
We may not know you in real life but you've touched our souls via your posts .. Truely

I refuse to believe that there is no plan for us all.
Lili is a sweetheart in every sense of the word and has proven herself given the hardest road on earth.
This will not go unnoticed.

 

[Wolfmother]

God bless her brother. God wants her home already, obviously she is too good for this world.

Our Angel is going to go where we are aiming to be.

Please, these aren't just words, if there is anything that we can do for you, any little thing, please don't hesitate to ask.

Stay strong brother, you don't realise how strong you already are brother. God bless you.

That's beautiful assassin I believe this .