Diego

I feel a little nervous about tempting fate, but I know several families that go through so much hardship, that, when I'm having a rough day, I can always think of them and realise how lucky I am.
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Overnight lives can change, and just like that, your main purpose in life can change to that of a caretaker, researcher and advocate, all while dealing with your worst fears that you might - or will - lose a loved one.
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I lost an uncle to MND (Lou Gehrig's disease) back when I left for the States. I've already mentioned my little cousin that died recently. One of my in-laws had to have several brain surgeries about 4 years ago, that left her with balance and fine motor skills problems (ie. she can not walk unaided and things like writing or knitting are a struggle). A friend has a child with Angelman syndrome. Even my own parents had to deal with a child with TB (fully recovered now). The list goes on and on. And, of course, there's my friend whose child has cancer.
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Not only have they had to fight disease and illness, I've also had to watch them fight to get the resources that they need, the care that they need, the therapies that they need - and I keep wondering, why hasn't anyone made it easier? Why should a family going through this type of nightmare have to worry about anything other than their loved one? Especially here in the States, where we pay so much into health insurance, yet, without fail, everyone that I know that has needed care above and beyond the usual, has had to make multiple calls to their insurance to try to get it.
There's a paragraph or two in my sidebar about Diego. He's the 4 year old boy who has been fighting cancer since 2006. It did come back this year and he had to have his arm amputated. Then it showed up in his lungs and he also had to have yet another surgery this month to remove tumours in his brain. The great news is that a recent chest x-ray shows that the chemo is working!
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The not-so-great news is that their insurance officially denied their treatment at that hospital, telling them that they are responsible for a bill that is, at last count, $55,000. This is a family that has been careful with money - they bought a house that they could afford, taking a loan that was $100,000 less than what they qualified for, they do not have car payments - they own their cars, they go camping for their vacations.
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I'm a worrier. We've had unexpected car repair bills this year and ended up getting our bathroom redone, as the plumbing and electrical work had to be done anyway. What with the higher food prices, petrol (gas) prices and our utility bills all increasing their rates lately, I've been worrying about money being a little tight around here lately. But that pales in comparison to getting the news that you are responsible for a $55,000 bill - on top of all the other expenses that this disease has cost them.
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nb. His mum has finally been convinced to set up a non-profit fund to help with medical costs. I'll have no idea if any of you do donate, so there certainly isn't any pressure here, but just in case you would like to make a tax-deductible donation, the info is over there in the sidebar, as is a link to his caringbridge website, that his mum keeps updated with his progress.
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My daughter might have scribbled over my mantlepiece with a crayon, I might be putting off visiting the dentist until my savings account looks a little healthier, it might be quite a while before we can get the money together for a visit home, but I know how lucky I am.

11 comments:

  1. What a poor, brave, smiling little boy! You are right - we should realise how lucky we are. Lucy x

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  2. i get so angry about health costs. it's not fair. certainly not to a family that IS responsible and frugil and simply trying to fight to survive for their son.

    i pray that everything will come through. with little stress or worries. and many balloons and laughter.

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  3. The insurance companies seem a real lottery, we complain about the NHS but at least we can get help when we need it without facing a life time of debt
    What a brave boy.

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  4. Thanks for the perspective, especially as we approach the Thanksgiving holiday.

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  5. Such a brave boy, and such a brave family. Your post has brought me up short and made me consider that all my worrying about how bad things might get financially for us is futile - we should just make the best of what we have right now. Thank you for that.

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  6. This is a surprise to me. I had always assumed that health insurance would pay up when the need is obviously so evident. God bless the NHS and all its faults.

    Fingers crossed that the chemo continues to work.

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  7. she needs to go to her local NEW STATION and get this on the air. Insurance companies simply steal from well meaning, hard working families in their hour of need. Fighting it by making it PUBLIC is the most effective.......

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  8. Thanks for the meessage - yes now I feel bad about complaining about a dog that cost me a few thousand and a car that seems to be a bottomless pit this year.

    Hugs to Diego - what a sweet little boy and his family sound very strong. Hugs to them all and to friends like you!

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  9. What a great smile! Sending him and his family lots of prayers and hope.
    Thank you for reminding us all of what we have.

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  10. And there I was worrying about a £400 dental bill. Certainly puts things in perspective. Glad to hear that the treatment is working.

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  11. It really does put things in perspective. My heart goes out to that family, and I personally think it is criminal, our health care system. They already have so much to worry about and finances and insurance coverage shouldn't have to be one of them.

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