Little Leona is dreaming an angelic dream

@northernraven49 ... I am truly, deeply glad that you decided to join us here 👋 🙂

northernraven49 said:Don't worry, she is NOT going to end up that way. The doctors actually got the diagnosis right this time; it’s just that, unfortunately, they haven't managed to cure a single child with JMML here in the States.
An Austrian team saved one little American boy, and at this rate, the doctors in Germany will be the ones to save our Leona.
I asked Daniel how my little sunshine is doing and how my big sunshine is doing, and he told me:
the little sunshine looks slightly better in certain areas.
The head doctor said she’s going to monitor her closely now to see whether
this new therapy has started to work or if things are about to take another turn for the worse.
(It’s been a bit of a roller coaster—feeling a little better, then getting worse two days later). They have
some other medications being prepared in case things decline again, but
they are being much more aggressive with their approach and plan to wait a bit before jumping straight in
with them.
white blood cell count is 5k, platelets at 64.
Temperature is hitting 100.2.
She ate a little bit of baby food; otherwise, it's business as usual.
As for the big sunshine, she's enjoying life to the fullest.
To her, this whole thing feels like some grand adventure, and honestly, thank God she sees it that way.
School wrapped up on July 31st, and now there's a massive schedule of activities for
the kids staying in town. Even the ladies at the daycare center are constantly
taking them out on field trips. Just imagine, tomorrow they're heading to Europa-Park. It's something
like Disneyland, though the locals here love to brag that it's actually better than
Disneyland.

So, for anyone following along, here is the reality of where Leona stands:
She survived heavy-duty chemotherapy (which was a huge gamble given how tiny she is), she survived the transplant (which isn't exactly rocket science—you could probably pull off a similar procedure at a local vet clinic), and she is currently navigating the hardest part: the post-transplant period. She is fighting through the side effects quite successfully, thanks largely to the immense expertise of the medical team in Germany.
There was this prominent specialist back home who claimed he could perform transplants here (and he could, there's no reason why he couldn't), but when asked if he knew how to manage the complications that arise after a transplant, he admitted it wasn't his specialty and he didn't know. That was the honest truth, yet his opinion was used by Medicare as the deciding factor to insist the girl be treated here in the US instead...

I'm keeping my fingers crossed for you!
This world can be a cruel place.
By the way, do you happen to know if German insurance covers this kind of treatment for its own policyholders?

Thomas Fowler84 said:I'm keeping my fingers crossed for you!
This world can be a cruel place.
By the way, do you happen to know if German insurance covers this kind of treatment for its own policyholders?

It’s fully covered, so don't let anyone give you the wrong idea. All over the world—including here at home—treating oncology patients is incredibly expensive.

Thomas Fowler84 said:I'm keeping my fingers crossed for you!
This world can be a cruel place.
By the way, do you happen to know if German insurance covers this kind of treatment for its own policyholders?

Thanks for the well wishes. Every bit of support helps us right now. As for the world being harsh—well, I suppose it depends on who you ask. For some, it's brutal; for others, it's manageable; and for a certain class of people, it isn't harsh at all. It all comes down to your pedigree.

As for how things stand today—and I’m almost afraid to even say it out loud—things are looking a little better.
The little one seems a bit more herself; she’s a bit more cheerful, playing a bit more, and
she actually managed to eat a spoonful of ice cream.
I’m honestly really happy about that.
The thing is, this ward is incredibly tricky. You can never truly tell if
things have finally turned a corner or if everything will just spiral downhill again tomorrow.
We’ve seen cases where kids were supposed to be heading home in a few days, and then suddenly
they were just gone...
So, it’s hard to actually relax, though it was much easier yesterday just seeing her
in a slightly better state.
On a brighter note, I have to brag a little: the nurses rewarded her today with
a cute little kid's pillow for being such a brave patient.
Basically, despite the fact that the staff isn't exactly in the best mood or acting particularly charming
like they usually do, she’s somehow managed to charm the nurses and doctors alike.
Every time I look, there's some new little toy sitting by her bed, and when
I ask where it came from, it’s always Auntie Ina, Auntie Bago (actually Gabi), or Auntie Lina
(Nikolina). I should mention that Nurse Nikolina is one of our wonderful young
ladies from back home, and besides being an incredibly warm and kind soul, she’s also
a fantastic nurse who has helped us immensely.
The other nurses even praised her for how well she cooperates; usually, there’s a bit of a struggle
with kids who don't speak German, but with her, it's seamless. Even in the middle
of the night, she won't even open her eyes, but as soon as she hears someone walking in, she lifts her arm because she knows
they're there to check her blood pressure. And once that's done, she presents her backside so they can change her.
They all just laugh; she’s truly no trouble at all.
We’ve even trained the doctors now; every time they walk into the room,
they make sure to say "hi" and "how are you?" properly. Pretty soon, we’ll have everyone here speaking
American.

This is absolutely fantastic news... I really hope we start hearing more and more wonderful updates like this every single day 👍

Things are mostly staying the same; her white blood cell count dropped to 4,000, which hasn't changed much,
she’s having some stomach pain, though I'm hoping it’s just because she’s finally started to
eat a little bit again—her stomach is probably just in shock since it hasn't seen real food in over a month,
so it needs time to adjust. Even though she's still quite weak, she plays around a bit
and is still babbling away at 16 months old. We just can't seem to shake this fever, though;
it keeps hovering right around 100.4.

northernraven49 said:TOTAL SURPRISE

They actually let us out for two hours today.

It’s pure bliss!
Even though we are still miles away from solving our actual problem and everything remains incredibly uncertain, we are absolutely over the moon just to have had those two hours outside of the sterile room.
Just imagine being stuck in a hospital for 45 days—36 of which were spent trapped inside a sterile isolation room. I promised myself I wouldn't complain, I really did, but honestly, we were running out of ways to pass the time or even keep ourselves sane. At least now the days might move a little faster.

The core situation hasn't changed, but since our blood work
is looking good, well—we got permission to step out. And we are beyond happy about it.

👋 👋 👋

Leona with her little sidekick Lana😍

northernraven49 said:

👋 👋

northernraven49 said:As for the medical side of things, it actually seems like we're turning a corner.
Her skin is looking a bit better. She’s scheduled for another round of therapy tomorrow and the day after, which means we’ll squeeze in one last walk today before being sentenced to three straight days stuck in a hospital room again.
She’s eating quite a bit—apparently a side effect of the corticosteroids—and her blood counts are finally starting to fill back up. Her arms and legs look completely foreign to me right now; it's just bone and skin.
The fever is still giving us trouble, though—it keeps spiking up to about 100 degrees.
But honestly, she is so incredibly spirited. There isn't a hint of anxiety in her. She's still my same old Leona, the kind of kid where everything just feels easy. It makes me so damn proud to be with her, playing games and just joking around...
I just really hope the worst is behind us and that this nightmare doesn't come back to haunt us.
Kisses.

A letter from Daniela to "a certain gentleman."

Regarding that gentleman—he might not have meant any harm, but given the reality we're living through right now, I can't just sit here and stay silent. My two-year-old has been going through a literal hell for months now, a level of suffering you couldn't even fathom in your wildest dreams just to fight for their own life. Because of that, I simply cannot tolerate hearing her spoken about as if she were nothing more than an expense or a drain on resources that could be "better utilized" elsewhere.

The clerk who handled our request at Medicare doesn't exactly possess a crystal ball or any sort of psychic intuition to determine who stands a chance and who doesn't. To be honest, she had never even heard of this diagnosis, let alone understood anything about it or the actual survival odds involved. In fact, it felt like nobody else in the entire country knew what we were dealing with.
I also highly doubt that "efficiency" or deciding who actually stands a chance is part of a doctor's job description. In my view, their sole responsibility should be to treat the patient in front of them, period. Regardless of the circumstances, they should be focused on healing every individual under their care.
Our request wasn't denied because of the money, even though, as you pointed out, Leona represents a significant cost to our healthcare system. It was rejected solely because one doctor decided she’d make the perfect test subject—essentially deciding that a child with her diagnosis hasn't even happened yet, or likely won't, so we might as well play around with her case. But those are secondary issues for now; we'll be settling that in court.
The situation with Leona Zajšek is a perfect parallel to the tragic case of Martina Piric—both are absolute embarrassments to the Republic of America. It’s even more infuriating when you consider how the institutions handled Martina’s case; they only decided to step up after the public outcry reached a breaking point. Honestly, I have nothing good to say about their decision to finally offer financial support only after it was already too late.

Fortunately, we find ourselves in a completely different situation here. In this system, they don't sit around calculating how much a patient costs; the only metric that matters is how to actually help them. They don't just give up on anyone—not until every single possible avenue has been exhausted. And trust me, that process definitely doesn't end just because a diagnosis has been handed down.

What would you even say to a child who has survived their third transplant?
What was the actual price tag on all of that? And what were his odds? Let's be real—the cost of his treatment was astronomical, and the statistical chance of someone surviving three separate rounds of everything he went through was practically zero. Yet, here he is. He survived. When that first transplant failed, none of the doctors even blinked. They weren't sitting there calculating the bill or second-guessing whether it would work. They just immediately pivoted to the next attempt, then the one after that. They kept going until it finally worked.
Could they have managed the funds more efficiently? Could they have bragged about how much they saved? Of course they could. But at the end of the day, we aren't here to audit a balance sheet; we’re counting the lives that were actually saved. Money matters, obviously—it's vital—but it isn't the primary metric for success here.
Personally, I don't think our story has truly touched you, much like any other. It feels to me like you all live in your own little bubble, preoccupied with your own struggles and convinced that things like this only happen to other people. Our situation has become quite public—which isn't something I’m particularly happy about, but that's just how it turned out—and the facts are all there for anyone to verify. That said, I have no intention of trying to convince you that what we're going through is real, nor am I here to ask for your money or your sympathy.
I honestly don't believe you ever actually step up to help anyone, whether through official channels or otherwise. It’s just not your priority. Besides, I’m not sure why you all seem so convinced that you can trust how donations are handled, especially after those scandals involving child abuse at Caritas. But look, it doesn't matter. It's your money and your right to feel however you want about it.
And then there’s that friend of yours who buys a pair of shoes for $200, only to end up Venmoing someone later. $1.75Honestly, I think she can sleep soundly at night. That’s her money, and she can spend it however she damn well pleases. At least she actually stepped up and did something. You guys? You haven't done a thing.
Beyond the fact that you personally insulted me by referring to my child as an "expense," there’s also the matter of all these wonderful people trying to help us being mocked by idiots who claim they’re just throwing money away because Leona is a lost cause. Well, if you ask me, those donors are the true heroes here. They can sleep soundly knowing they contributed something meaningful toward saving a human life. To everyone who donated even a single cent... $1.75 Even those who didn't donate a single cent reached out. They called just to check in, to see how things were going, and to send their best wishes. I think it’s because they were all deeply moved by the fate of one little kid who is going through unimaginable pain.
It doesn't matter what you think. It really doesn't. You’re all still stuck on the idea that "doctors correctly assessed this was a lost cause," and therefore that $200,000 would be better spent elsewhere. Probably on some politician's hemorrhoid surgery, if we're being honest.
I genuinely wonder how you would react if it were you or your own family. Would you decide that you’re just a "drain on resources" and tell people to go help someone with a better chance, or would you expect help?
Personally, no human life is ever a waste. We aren't some charity case; we have jobs, an apartment, and a car. But unfortunately, we don't have $200,000 lying around to fund her treatment. I’ve never been in debt to anyone in my life, nor have I ever been in a position where I had to beg for anything. Now, I find myself owing a massive number of people across the entire country, and let me tell you, it isn't fun. Honestly, it’s pretty humiliating.
But I made a promise to myself that I would do EVERYTHING for her. Because I wouldn't be any happier if I had a BMW parked outside my window instead of an old junker, or $200 shoes instead of $67, but I would be miserable for the rest of my life if I failed to help her. At the end of the day, the only things truly worth anything to me are my children, my family, and my friends.
That is the only thing that actually matters. Everything else is just stuff—things that might make life a little easier, sure, but they are ultimately insignificant. My car, my apartment, my TV, everything I own is a "waste" by that logic, but a human life is a GIFT, and every single one is worth fighting for.

northernraven49 said:I've finally managed to get back on my feet.
Yesterday, I was absolutely wrecked by some stomach issues—diarrhea, vomiting, the whole works.
Had a fever of 100, my head was throbbing, and the room wouldn't stop spinning.
Feeling a bit better today.
I sent those photos over to you again; fingers crossed they actually make it through this time.

The doctors seem happy with the progress. She’s still on skin treatments and a mountain of other medications,
but we're staying positive. Every afternoon she gets to go outside, and it's wonderful.
Her skin is improving, albeit at a snail's pace, along with everything else.
They are slowly tapering off the meds, but honestly, her room still looks like a damn pharmacy.
Anyway, let's hope for the best—we won't count our chickens before they hatch.

http://photos-c.ak.fbcdn.net/hphotos..._5355545_n.jpg

http://photos-d.ak.fbcdn.net/hphotos..._6375058_n.jpg

http://photos-e.ak.fbcdn.net/hphotos..._5433234_n.jpg

...

northernraven49 said:A letter from Daniela to "a certain gentleman."

Regarding that gentleman—he might not have meant any harm, but given the reality we're living through right now, I can't just sit here and stay silent. My two-year-old has been going through a literal hell for months now, a level of suffering you couldn't even fathom in your wildest dreams just to fight for their own life. Because of that, I simply cannot tolerate hearing her spoken about as if she were nothing more than an expense or a drain on resources that could be "better utilized" elsewhere.

The clerk who handled our request at Medicare doesn't exactly possess a crystal ball or any sort of psychic intuition to determine who stands a chance and who doesn't. To be honest, she had never even heard of this diagnosis, let alone understood anything about it or the actual survival odds involved. In fact, it felt like nobody else in the entire country knew what we were dealing with.
I also highly doubt that "efficiency" or deciding who actually stands a chance is part of a doctor's job description. In my view, their sole responsibility should be to treat the patient in front of them, period. Regardless of the circumstances, they should be focused on healing every individual under their care.
Our request wasn't denied because of the money, even though, as you pointed out, Leona represents a significant cost to our healthcare system. It was rejected solely because one doctor decided she’d make the perfect test subject—essentially deciding that a child with her diagnosis hasn't even happened yet, or likely won't, so we might as well play around with her case. But those are secondary issues for now; we'll be settling that in court.
The situation with Leona Zajšek is a perfect parallel to the tragic case of Martina Piric—both are absolute embarrassments to the Republic of America. It’s even more infuriating when you consider how the institutions handled Martina’s case; they only decided to step up after the public outcry reached a breaking point. Honestly, I have nothing good to say about their decision to finally offer financial support only after it was already too late.

Fortunately, we find ourselves in a completely different situation here. In this system, they don't sit around calculating how much a patient costs; the only metric that matters is how to actually help them. They don't just give up on anyone—not until every single possible avenue has been exhausted. And trust me, that process definitely doesn't end just because a diagnosis has been handed down.

What would you even say to a child who has survived their third transplant?
What was the actual price tag on all of that? And what were his odds? Let's be real—the cost of his treatment was astronomical, and the statistical chance of someone surviving three separate rounds of everything he went through was practically zero. Yet, here he is. He survived. When that first transplant failed, none of the doctors even blinked. They weren't sitting there calculating the bill or second-guessing whether it would work. They just immediately pivoted to the next attempt, then the one after that. They kept going until it finally worked.
Could they have managed the funds more efficiently? Could they have bragged about how much they saved? Of course they could. But at the end of the day, we aren't here to audit a balance sheet; we’re counting the lives that were actually saved. Money matters, obviously—it's vital—but it isn't the primary metric for success here.
Personally, I don't think our story has truly touched you, much like any other. It feels to me like you all live in your own little bubble, preoccupied with your own struggles and convinced that things like this only happen to other people. Our situation has become quite public—which isn't something I’m particularly happy about, but that's just how it turned out—and the facts are all there for anyone to verify. That said, I have no intention of trying to convince you that what we're going through is real, nor am I here to ask for your money or your sympathy.
I honestly don't believe you ever actually step up to help anyone, whether through official channels or otherwise. It’s just not your priority. Besides, I’m not sure why you all seem so convinced that you can trust how donations are handled, especially after those scandals involving child abuse at Caritas. But look, it doesn't matter. It's your money and your right to feel however you want about it.
And then there’s that friend of yours who buys a pair of shoes for $200, only to end up Venmoing someone later. $1.75Honestly, I think she can sleep soundly at night. That’s her money, and she can spend it however she damn well pleases. At least she actually stepped up and did something. You guys? You haven't done a thing.
Beyond the fact that you personally insulted me by referring to my child as an "expense," there’s also the matter of all these wonderful people trying to help us being mocked by idiots who claim they’re just throwing money away because Leona is a lost cause. Well, if you ask me, those donors are the true heroes here. They can sleep soundly knowing they contributed something meaningful toward saving a human life. To everyone who donated even a single cent... $1.75 Even those who didn't donate a single cent reached out. They called just to check in, to see how things were going, and to send their best wishes. I think it’s because they were all deeply moved by the fate of one little kid who is going through unimaginable pain.
It doesn't matter what you think. It really doesn't. You’re all still stuck on the idea that "doctors correctly assessed this was a lost cause," and therefore that $200,000 would be better spent elsewhere. Probably on some politician's hemorrhoid surgery, if we're being honest.
I genuinely wonder how you would react if it were you or your own family. Would you decide that you’re just a "drain on resources" and tell people to go help someone with a better chance, or would you expect help?
Personally, no human life is ever a waste. We aren't some charity case; we have jobs, an apartment, and a car. But unfortunately, we don't have $200,000 lying around to fund her treatment. I’ve never been in debt to anyone in my life, nor have I ever been in a position where I had to beg for anything. Now, I find myself owing a massive number of people across the entire country, and let me tell you, it isn't fun. Honestly, it’s pretty humiliating.
But I made a promise to myself that I would do EVERYTHING for her. Because I wouldn't be any happier if I had a BMW parked outside my window instead of an old junker, or $200 shoes instead of $67, but I would be miserable for the rest of my life if I failed to help her. At the end of the day, the only things truly worth anything to me are my children, my family, and my friends.
That is the only thing that actually matters. Everything else is just stuff—things that might make life a little easier, sure, but they are ultimately insignificant. My car, my apartment, my TV, everything I own is a "waste" by that logic, but a human life is a GIFT, and every single one is worth fighting for.

👍

I honestly can't believe that on top of dealing with a serious illness and all this endless red tape (to say the least), a family also has to deal with people like this. I get it, there are skeptics and cold-hearted people out there, but seriously, could they not just keep their opinions to themselves? Or at least express them somewhere where they won't cause actual pain to the people they're talking about...

northernraven49 said:A letter from Daniela to "a certain gentleman."

Regarding that gentleman—he might not have meant any harm, but given the reality we're living through right now, I can't just sit here and stay silent. My two-year-old has been going through a literal hell for months now, a level of suffering you couldn't even fathom in your wildest dreams just to fight for their own life. Because of that, I simply cannot tolerate hearing her spoken about as if she were nothing more than an expense or a drain on resources that could be "better utilized" elsewhere.

The clerk who handled our request at Medicare doesn't exactly possess a crystal ball or any sort of psychic intuition to determine who stands a chance and who doesn't. To be honest, she had never even heard of this diagnosis, let alone understood anything about it or the actual survival odds involved. In fact, it felt like nobody else in the entire country knew what we were dealing with.
I also highly doubt that "efficiency" or deciding who actually stands a chance is part of a doctor's job description. In my view, their sole responsibility should be to treat the patient in front of them, period. Regardless of the circumstances, they should be focused on healing every individual under their care.
Our request wasn't denied because of the money, even though, as you pointed out, Leona represents a significant cost to our healthcare system. It was rejected solely because one doctor decided she’d make the perfect test subject—essentially deciding that a child with her diagnosis hasn't even happened yet, or likely won't, so we might as well play around with her case. But those are secondary issues for now; we'll be settling that in court.
The situation with Leona Zajšek is a perfect parallel to the tragic case of Martina Piric—both are absolute embarrassments to the Republic of America. It’s even more infuriating when you consider how the institutions handled Martina’s case; they only decided to step up after the public outcry reached a breaking point. Honestly, I have nothing good to say about their decision to finally offer financial support only after it was already too late.

Fortunately, we find ourselves in a completely different situation here. In this system, they don't sit around calculating how much a patient costs; the only metric that matters is how to actually help them. They don't just give up on anyone—not until every single possible avenue has been exhausted. And trust me, that process definitely doesn't end just because a diagnosis has been handed down.

What would you even say to a child who has survived their third transplant?
What was the actual price tag on all of that? And what were his odds? Let's be real—the cost of his treatment was astronomical, and the statistical chance of someone surviving three separate rounds of everything he went through was practically zero. Yet, here he is. He survived. When that first transplant failed, none of the doctors even blinked. They weren't sitting there calculating the bill or second-guessing whether it would work. They just immediately pivoted to the next attempt, then the one after that. They kept going until it finally worked.
Could they have managed the funds more efficiently? Could they have bragged about how much they saved? Of course they could. But at the end of the day, we aren't here to audit a balance sheet; we’re counting the lives that were actually saved. Money matters, obviously—it's vital—but it isn't the primary metric for success here.
Personally, I don't think our story has truly touched you, much like any other. It feels to me like you all live in your own little bubble, preoccupied with your own struggles and convinced that things like this only happen to other people. Our situation has become quite public—which isn't something I’m particularly happy about, but that's just how it turned out—and the facts are all there for anyone to verify. That said, I have no intention of trying to convince you that what we're going through is real, nor am I here to ask for your money or your sympathy.
I honestly don't believe you ever actually step up to help anyone, whether through official channels or otherwise. It’s just not your priority. Besides, I’m not sure why you all seem so convinced that you can trust how donations are handled, especially after those scandals involving child abuse at Caritas. But look, it doesn't matter. It's your money and your right to feel however you want about it.
And then there’s that friend of yours who buys a pair of shoes for $200, only to end up Venmoing someone later. $1.75Honestly, I think she can sleep soundly at night. That’s her money, and she can spend it however she damn well pleases. At least she actually stepped up and did something. You guys? You haven't done a thing.
Beyond the fact that you personally insulted me by referring to my child as an "expense," there’s also the matter of all these wonderful people trying to help us being mocked by idiots who claim they’re just throwing money away because Leona is a lost cause. Well, if you ask me, those donors are the true heroes here. They can sleep soundly knowing they contributed something meaningful toward saving a human life. To everyone who donated even a single cent... $1.75 Even those who didn't donate a single cent reached out. They called just to check in, to see how things were going, and to send their best wishes. I think it’s because they were all deeply moved by the fate of one little kid who is going through unimaginable pain.
It doesn't matter what you think. It really doesn't. You’re all still stuck on the idea that "doctors correctly assessed this was a lost cause," and therefore that $200,000 would be better spent elsewhere. Probably on some politician's hemorrhoid surgery, if we're being honest.
I genuinely wonder how you would react if it were you or your own family. Would you decide that you’re just a "drain on resources" and tell people to go help someone with a better chance, or would you expect help?
Personally, no human life is ever a waste. We aren't some charity case; we have jobs, an apartment, and a car. But unfortunately, we don't have $200,000 lying around to fund her treatment. I’ve never been in debt to anyone in my life, nor have I ever been in a position where I had to beg for anything. Now, I find myself owing a massive number of people across the entire country, and let me tell you, it isn't fun. Honestly, it’s pretty humiliating.
But I made a promise to myself that I would do EVERYTHING for her. Because I wouldn't be any happier if I had a BMW parked outside my window instead of an old junker, or $200 shoes instead of $67, but I would be miserable for the rest of my life if I failed to help her. At the end of the day, the only things truly worth anything to me are my children, my family, and my friends.
That is the only thing that actually matters. Everything else is just stuff—things that might make life a little easier, sure, but they are ultimately insignificant. My car, my apartment, my TV, everything I own is a "waste" by that logic, but a human life is a GIFT, and every single one is worth fighting for.

👋👋👋

northernraven49 said:A letter from Daniela to "a certain gentleman."

Regarding that gentleman—he might not have meant any harm, but given the reality we're living through right now, I can't just sit here and stay silent. My two-year-old has been going through a literal hell for months now, a level of suffering you couldn't even fathom in your wildest dreams just to fight for their own life. Because of that, I simply cannot tolerate hearing her spoken about as if she were nothing more than an expense or a drain on resources that could be "better utilized" elsewhere.

The clerk who handled our request at Medicare doesn't exactly possess a crystal ball or any sort of psychic intuition to determine who stands a chance and who doesn't. To be honest, she had never even heard of this diagnosis, let alone understood anything about it or the actual survival odds involved. In fact, it felt like nobody else in the entire country knew what we were dealing with.
I also highly doubt that "efficiency" or deciding who actually stands a chance is part of a doctor's job description. In my view, their sole responsibility should be to treat the patient in front of them, period. Regardless of the circumstances, they should be focused on healing every individual under their care.
Our request wasn't denied because of the money, even though, as you pointed out, Leona represents a significant cost to our healthcare system. It was rejected solely because one doctor decided she’d make the perfect test subject—essentially deciding that a child with her diagnosis hasn't even happened yet, or likely won't, so we might as well play around with her case. But those are secondary issues for now; we'll be settling that in court.
The situation with Leona Zajšek is a perfect parallel to the tragic case of Martina Piric—both are absolute embarrassments to the Republic of America. It’s even more infuriating when you consider how the institutions handled Martina’s case; they only decided to step up after the public outcry reached a breaking point. Honestly, I have nothing good to say about their decision to finally offer financial support only after it was already too late.

Fortunately, we find ourselves in a completely different situation here. In this system, they don't sit around calculating how much a patient costs; the only metric that matters is how to actually help them. They don't just give up on anyone—not until every single possible avenue has been exhausted. And trust me, that process definitely doesn't end just because a diagnosis has been handed down.

What would you even say to a child who has survived their third transplant?
What was the actual price tag on all of that? And what were his odds? Let's be real—the cost of his treatment was astronomical, and the statistical chance of someone surviving three separate rounds of everything he went through was practically zero. Yet, here he is. He survived. When that first transplant failed, none of the doctors even blinked. They weren't sitting there calculating the bill or second-guessing whether it would work. They just immediately pivoted to the next attempt, then the one after that. They kept going until it finally worked.
Could they have managed the funds more efficiently? Could they have bragged about how much they saved? Of course they could. But at the end of the day, we aren't here to audit a balance sheet; we’re counting the lives that were actually saved. Money matters, obviously—it's vital—but it isn't the primary metric for success here.
Personally, I don't think our story has truly touched you, much like any other. It feels to me like you all live in your own little bubble, preoccupied with your own struggles and convinced that things like this only happen to other people. Our situation has become quite public—which isn't something I’m particularly happy about, but that's just how it turned out—and the facts are all there for anyone to verify. That said, I have no intention of trying to convince you that what we're going through is real, nor am I here to ask for your money or your sympathy.
I honestly don't believe you ever actually step up to help anyone, whether through official channels or otherwise. It’s just not your priority. Besides, I’m not sure why you all seem so convinced that you can trust how donations are handled, especially after those scandals involving child abuse at Caritas. But look, it doesn't matter. It's your money and your right to feel however you want about it.
And then there’s that friend of yours who buys a pair of shoes for $200, only to end up Venmoing someone later. $1.75Honestly, I think she can sleep soundly at night. That’s her money, and she can spend it however she damn well pleases. At least she actually stepped up and did something. You guys? You haven't done a thing.
Beyond the fact that you personally insulted me by referring to my child as an "expense," there’s also the matter of all these wonderful people trying to help us being mocked by idiots who claim they’re just throwing money away because Leona is a lost cause. Well, if you ask me, those donors are the true heroes here. They can sleep soundly knowing they contributed something meaningful toward saving a human life. To everyone who donated even a single cent... $1.75 Even those who didn't donate a single cent reached out. They called just to check in, to see how things were going, and to send their best wishes. I think it’s because they were all deeply moved by the fate of one little kid who is going through unimaginable pain.
It doesn't matter what you think. It really doesn't. You’re all still stuck on the idea that "doctors correctly assessed this was a lost cause," and therefore that $200,000 would be better spent elsewhere. Probably on some politician's hemorrhoid surgery, if we're being honest.
I genuinely wonder how you would react if it were you or your own family. Would you decide that you’re just a "drain on resources" and tell people to go help someone with a better chance, or would you expect help?
Personally, no human life is ever a waste. We aren't some charity case; we have jobs, an apartment, and a car. But unfortunately, we don't have $200,000 lying around to fund her treatment. I’ve never been in debt to anyone in my life, nor have I ever been in a position where I had to beg for anything. Now, I find myself owing a massive number of people across the entire country, and let me tell you, it isn't fun. Honestly, it’s pretty humiliating.
But I made a promise to myself that I would do EVERYTHING for her. Because I wouldn't be any happier if I had a BMW parked outside my window instead of an old junker, or $200 shoes instead of $67, but I would be miserable for the rest of my life if I failed to help her. At the end of the day, the only things truly worth anything to me are my children, my family, and my friends.
That is the only thing that actually matters. Everything else is just stuff—things that might make life a little easier, sure, but they are ultimately insignificant. My car, my apartment, my TV, everything I own is a "waste" by that logic, but a human life is a GIFT, and every single one is worth fighting for.

I am unsure if this part of the text was directed at me, but I believe that right now, bickering is the last thing anyone needs, so I will briefly elaborate on my position. To be honest, I wasn't aware you were reading this; had I known, I might have phrased things with more sensitivity. It seems there has been a misunderstanding, as I stated in my previous post that, as a parent, I would do everything in my power to save my child's life. I am sorry if my words were perceived as a judgment of anyone other than the system itself. My anger is aimed squarely at an inefficient system, which is why I try to direct my own funds toward more effective channels.

My comment was specifically about the fact that our government system is so broken that a symptom of this failure is precisely what we see here: "everyone helping in their own way." In an ideal system, what you are doing wouldn't even be necessary. Each individual must decide whether to contribute to an inefficient system (though there is often little choice), a more efficient one, or provide "direct aid into someone's hands."

I also noticed that what I witnessed with my acquaintance isn't an isolated incident. I understand her motives for donating those few dollars; it is perfectly clear to me that from your perspective, every cent counts, even if someone gives just to ease their own conscience (we are human, and I believe we all do this indirectly to compensate for guilt). I am simply saying that those who truly wish to help people in need have opportunities to do so every day, rather than only when they read a personal tragedy in the news. Furthermore, the "ego trip" of some individuals often surfaces, where they want to be the ones deciding who is most deserving of help.

I think I overstepped by mentioning Martina, as I realized afterward that the circumstances were different.

In any case, I am keeping my fingers crossed for a recovery!!!
Good luck.

Thomas Fowler84, those words you used—saying you were afraid Leonica would end up like "that" Martina—well, Martina is a person with her own name, she isn't just some "her." I don't know if you have kids yourself, but I do, and God forbid any of them ever face an illness like this... I would move heaven and earth, clawing at everything in my way, just to help them, exactly like Leonin's parents are doing. And Danijela, please listen: there is absolutely nothing humiliating about asking for help. We all know that regular families like ours don't even have $100 tucked away for emergencies, let alone $200,000. In many cases, we have the media, newspapers, and TV stations to thank because they help spread the word—people actually want to help. Maybe if Martina had been featured in the news earlier, she might still be here with us among so many other children. Thomas Fowler84, God forbid your own child ever becomes a burden on the state; maybe then you'd truly understand what a child means and what parental love really is. I am praying for Leona, and I know she’s going to get better and be that same happy little girl she’s always been, no matter what she has to go through. If you can't wish these parents well, then please, just stop talking nonsense—it's pointless. Leona is going to pull through, she already is. Honestly, it would be much smarter of you to just chip in a few bucks.

boldrider53 said:Thomas Fowler84, those words you used—saying you were afraid Leonica would end up like "that" Martina—well, Martina is a person with her own name, she isn't just some "her." I don't know if you have kids yourself, but I do, and God forbid any of them ever face an illness like this... I would move heaven and earth, clawing at everything in my way, just to help them, exactly like Leonin's parents are doing. And Danijela, please listen: there is absolutely nothing humiliating about asking for help. We all know that regular families like ours don't even have $100 tucked away for emergencies, let alone $200,000. In many cases, we have the media, newspapers, and TV stations to thank because they help spread the word—people actually want to help. Maybe if Martina had been featured in the news earlier, she might still be here with us among so many other children. Thomas Fowler84, God forbid your own child ever becomes a burden on the state; maybe then you'd truly understand what a child means and what parental love really is. I am praying for Leona, and I know she’s going to get better and be that same happy little girl she’s always been, no matter what she has to go through. If you can't wish these parents well, then please, just stop talking nonsense—it's pointless. Leona is going to pull through, she already is. Honestly, it would be much smarter of you to just chip in a few bucks.

Thomas Fowler84, those words are too heavy. You said you were afraid Leonica would end up like "that" Martina, but Martina is her own person with her own name; she isn't just "her."[/I]

Yes, I am afraid, and I don't see what the issue is. I mentioned Martini by name, so I fail to see the point of your comment—especially since I have since retracted my comparison, as it appears these two cases are actually quite distinct.

Quote:

As a parent, you have to do everything within your power to save your child's life. I don't know if you have children, but I do. Heaven forbid they ever face an illness like this; I would move mountains to help them, just as Leonina's parents are doing.

What else could I have possibly written? As a parent, I would do absolutely everything in my power to save my child's life. This is the third time I’ve said it, and if anyone hasn't understood me yet, I am more than willing to repeat it ten times over.
I have no idea why anyone would get the impression that I am judging this or finding it humiliating.

Quote:

Wishing Leon the best of luck. ... Keeping my fingers crossed for you all! If you can't wish these parents luck, please stop talking nonsense. Leona is going to pull through—she already is. It would be much wiser of you to simply make a donation to the GoFundMe.

And what have I done, other than wish someone well?
It seems some people here just enjoy bickering for the sake of it. I’m not judging anyone for asking for help, nor am I one of those people who turns a blind eye to kids in need—in fact, I set aside $200 from my own budget every month for this. If anything I wrote came across differently than intended, I apologize; we are all on the same side here, and we all want to see Leona recover. If there is something specific I said that you disagree with, please quote me so we can have a civil discussion about it.

Look, I’m asking you all—please, just please—keep the heavy insults and the nasty language out of this thread. We are talking about one tiny, precious life here, a little soul fighting with everything it has just to stay with us... Let’s focus on helping however we can, in whatever way we can. Please, let's not spend our energy judging one another instead of being kind.

northernraven49 said:Everything here is just status quo—or as the doctors love to say, "stable condition." Not better, not worse. The only real update is she’s started coughing a little bit, so they handed her an inhaler. Next week, they're going to try pausing the skin therapy to see how she reacts. As for the rest of the meds? We still have a massive mountain of them left.
Every single afternoon, we spend two hours outside, though our mobility is pretty limited since we have to steer clear of other kids, playgrounds, and crowds... so we mostly just wander around feeding the ducks. Honestly, that’s become our main source of joy and our ultimate bargaining chip when trying to convince the "experts" to let her nap in the afternoon. It’s like, "Hey, if you take a nap, maybe we'll let you go outside and feed the ducks later." And hey, it works like a charm.
The only real headache is having to head back to the hospital in the evening. She doesn't get why she has to go back now when she was doing so well, and she definitely doesn't understand why the rest of us get to sleep together in the parent suite while she can't...

Other than that, she's in high spirits and everything is great. Finally, those three and a half books we keep in the sterile room have been "read" by heart because we know them by memory. I am honestly losing my mind over the Strawberry book, so now our main entertainment is the Malisani.
You seriously have to see the choreography! Watching a tiny two-year-old attempt to dance on those little legs that can barely hold her up—all while tripping over tubes sticking out everywhere and trying to keep rhythm with an IV pole that has zero sense of tempo!
But the little one is nothing if not determined; she already knows all the lyrics by heart. Zlatko Stricek is going to be thrilled to have some new recruits for his choir.
Speaking of which, our older "Malisanka," who really should know every lyric by heart even in the middle of the night, still insists on singing certain lines her own way. There’s this one verse that goes "...waves crashing against the shore..." but she stubbornly sings "
Zak" instead of "shore." When I asked, "What on earth is a Zak?" Lana just looked at me like I was crazy: "
How do you not know?! He's the big guy who sings children's songs!"
That’s all from us for today.
Sending lots of kisses to everyone!

Big congrats to Auntie Sandra from The Evening News for suddenly becoming a double aunt (to both Mom and Dad, obviously!), and tons of kisses to the little experts (send us a photo via email when you can, I just adore those little babies!)

And please, keep the good news coming. Even if I don't ask, because I'm such a worrier and terrified of hearing anything bad. We’re thinking of all of you—the girls from Mall of America and Pamona, William Murphy7's nephews, our buddies from Klaiceva... and everyone else too. So please, send us some good vibes!
Kisses

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