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Allowed to Live

9

January 16, 2012 by Marj Hatzell

Disclaimer: While I normally keep it PG-13ish here at Casa DG, I’ve been processing the following for a few days and I’ve run through a plethora of emotions. Don’t say you haven’t been warned. PC? Against cussing? Don’t read. Just sayin’.

If you are local to Philly or in the Special Needs world, chances are you’ve heard of a little girl named Amelia.  Amelia was born with a genetic disorder called Wolf-Hirschhorn Syndrome.  This disorder carries many medical side-effects, developmental delays, you name it. One of the most daunting that Amelia is facing is a kidney transplant.

Amelia is three. THREE-YEARS-OLD.  She has to go through a transplant, y’all. Do you know anything about transplants? Well, you can only get 2-3 of them in a lifetime and that’s if you don’t go through rejection. The transplant lasts something like 15 – 20 years and again, IF YOU DON’T GO THROUGH REJECTION.  This is not a routine procedure, despite the fact that the doctors and experts have it down to a science. TEEHEE!  No pun intended!  Ok, it totally was…

My Point? Well, according to a Wolf-Hirschhorn blog, Amelia was just rejected by a local hospital near and dear to my heart. They don’t want to list her. They quote quality of life issues, compliance after transplant, mental delays…basically, they don’t want to transplant her. She’s sick. She’ll die without a transplant and live on dialysis for a long, long time (hopefully she’ll survive that long). And if she gets a transplant? We’re talking major, major medical interventions for a long, long time. It’s no walk in the park.

Here’s the deal, yo. The parents feel that their daughter was denied a transplant based on her mental status. And this isn’t the first time I’ve heard of this. I’ve seen other news stories, magazine articles, blogs and the like all detailing something similar. Other sick, desperately ill children. Children with a variety of medical issues. Children with mental/developmental delays, mostly due to their medical issues. And these children are being turned away.

I’m not here to get into a religious discussion or an ethical one. I’m not even talking about morals here. I may not be the biggest special needs advocate(though people think I’d make a great one. Funny, no?) but I have to say something. I have to say something because of my boy. Because he’s “retarded.”  Because he’s “delayed.” Because he’s one of those kids that “isn’t going to contribute to society” and “drains our resources.”

Look, y’all. Put yourself in her family’s shoes for a moment. What if that were YOUR CHILD. And a doctor said, “Sorry, she’s retarded. She doesn’t deserve a kidney. Buh-bye!” And I know there’s more to this story and no doubt varying sides but I don’t give a rat’s ass.

This is about AMELIA.

This is about a little girl who deserves a chance to live, to grow, to play in the green grass, chase butterflies. To swing at the park on a beautiful spring day. To stick her toes in the sand and feel the waves crashing at her feet. She deserves life. Just like anyone else on this planet. So why is it our society suddenly doesn’t give two shits about kids like Amelia? Why is it that kids like mine are getting less and less respect? And don’t tell me it’s our president, it’s our laws, it’s our lack of morals, it’s our turning away from religions, it’s our new health care laws. etc, etc.

Bullshit.

It’s called entitlement and selfishness. It’s all about money and numbers and stats and data and businesses. No one wants to help anyone else anymore.

Or do they?

Because a few days ago, this happened.

And this.

And this.

And today? This.   And this evening? THIS.

And now Amelia isn’t alone in this fight. People are fighting with her family. For Amelia, for their children. For the future.

This is opening up discussion and debate. People are paying attention. People are listening. Some are being asshats. Some are being awesome.

And people are helping, and you can, too. So go there. Read. Help. Pray, vibe, sprinkle fairy dust. Dance around a fire under a full moon. Whatever you can do.

Help Amelia. Because you’ll be helping kids like mine, too.

9 thoughts on “Allowed to Live

  1. punkymama says:

    Amen…signed the petition and called chop myself….

  2. All true! All the attention of an equal playing field for kids with disabilities is a positive thing and this all brings to light how unbalanced it’s been.

  3. Dennis says:

    Well f*uck…..Selfish, covering their asses, hospital administrators.
    Keep fighting the good fight.
    Still not stalking you,
    D

  4. Thank you Marj for this awesome post. Someday when we meet the tots and wine are on me, okay?! 😉

  5. Emily says:

    Bravo! I know thé hospital you speak of. My daughter was subject to prejudice & she was only having a tonsillectomy & adniodectomy. The Dr. Asked me, “how do you except me to operate on her if she rocks, cant still she & has tantrums?” I told him,”to be blunt, how dare you even speak to me in such a tone! with all of your schooling I am sure you will figure it out! If you do not she will.suffocate! I am going to assume she is not the first autistic child you have operated on considering you are a pediactric ENT. I dont think she will be doing much rocking while under anesthea, Doctor! If you are going to make an issue out of this ,will too. I am sure you have a lawyer & have paid your malpractice insurance? ” I walked out went up to his nurse & asked where I could make an official complaint. I did schedule the opération but when I got to the hospital they refused to do thet opération. Well is waited & lets just say I voiced my opinion & within a week she had the opération with a new & extremely understanding Dr. Keep fighting!

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