[blparent] More about Amelia Rivera's Need foraKidney Transplant

Sat Jan 21 23:13:36 UTC 2012

I read up a lot on it before I posted to make sure it wasn't a hoax. 
There's actually information on the Children's Hospital of Philadelphia 
Facebook page about it.  They posted just a generic statement about how they 
don't discriminate.  But it isn't a hoax.

Jo Elizabeth

"How far you go in life depends on you being tender with the young, 
compassionate with the aged, sympathetic with the striving, and tolerant of 
the weak and the strong.  Because someday in life you will have been all of 
these."--George Washington Carver, 1864-1943, American scientist

--------------------------------------------------
From: "Angie Matney" <angie.matney at gmail.com>
Sent: Saturday, January 21, 2012 4:05 PM
To: "NFBnet Blind Parents Mailing List" <blparent at nfbnet.org>
Subject: Re: [blparent] More about Amelia Rivera's Need foraKidneyTransplant> Melissa, I googled this, and it does indeed appear to not be a hoax. From 
the little I've read, it doesn't sound like the hospital has denied the 
transplant yet, but this one doctor is going to recommend they do so based 
on his perception of her quality of life.
>
> Angie
>
>
> ----- Original Message ----- 
> From: "Melissa Ann Riccobono" <melissa at riccobono.us>
> To: "'NFBnet Blind Parents Mailing List'" <blparent at nfbnet.org>
> Sent: Saturday, January 21, 2012 5:49 PM
> Subject: Re: [blparent] More about Amelia Rivera's Need for aKidney 
> Transplant
>
>
>> So I assume, though I wish it were otherwise, that this is a true story 
>> and
>> not a scam of some type...
>> I hate to even ask this question, but there are so many things on the
>> internet that are not real that I just wanted to be sure before I signed
>> anything.  This is, indeed, extremely disturbing, outrageous...
>> Unbelievable.
>> Melissa
>>
>> -----Original Message-----
>> From: blparent-bounces at nfbnet.org [mailto:blparent-bounces at nfbnet.org] On
>> Behalf Of Kate McEachern
>> Sent: Saturday, January 21, 2012 2:37 PM
>> To: NFBnet Blind Parents Mailing List
>> Subject: Re: [blparent] More about Amelia Rivera's Need for a Kidney
>> Transplant
>>
>> I read up on this and signed up for updates as well and will be poesting 
>> it
>> to facebook.
>> Kate
>> ----- Original Message ----- 
>> From: "Jo Elizabeth Pinto" <jopinto at msn.com>
>> To: "NFBnet Blind Parents Mailing List" <blparent at nfbnet.org>
>> Sent: Saturday, January 21, 2012 12:30 AM
>> Subject: [blparent] More about Amelia Rivera's Need for a Kidney 
>> Transplant
>>
>>
>>> Hi.  Pipi posted a URL to a petition the other day, and I followed up on
>>> it and signed, but I wanted to make sure that none of you missed its
>>> significance.  Three-year-old Amelia Rivera is in need of a life-saving
>>> kidney transplant, but the Children's Hospital of Philadelphia doesn't
>>> want to give it to her because she's mentally handicapped.  The doctors
>>> don't believe she has quality of life because she's disabled.  This is 
>>> not
>>
>>> only tragic for Amelia and her family, it's scary for us all.  Who will 
>>> be
>>
>>> next when doctors get to start making decisions about who lives and who
>>> dies, who has a quality life and who doesn't?  Will the blind be barred
>>> from getting transplants?  The deaf?  The poor?  The brunette?  Okay, I
>>> may be stretching things, but I urge all of you to read the below text
>>> that I found from Amelia's mother, and then go to the following URL and
>>> sign the petition, and ask your friends and colleagues to sign as well. 
>>> I
>>
>>> think this should be cross posted on as many lists for blind people as
>>> possible.  The petitioners hope to present the hospital with a hundred
>>> thousand signatures, to show that people do care about ethics and the
>>> value of life.
>>>
>>>
>>>
>>> I am going to try and tell you what happened to us on January 10, 2012, 
>>> in
>>
>>> the conference room in the Nephrology department at Children's Hospital 
>>> of
>>
>>> Philadelphia.
>>>
>>> We arrived for our regular Nephrology visit with Amelia's doctor who has
>>> seen her for the last three years. She examines Amelia and sends us for
>>> labs. I ask about the transplant and she says we have about six months 
>>> to
>>> a year until she needs one. She tells us she reserved the conference 
>>> room
>>> and when we get back from labs, we can meet with the transplant team and
>>> he can tell us about the transplant process.
>>>
>>> After the labs, Amelia falls asleep in her stroller and we are called 
>>> back
>>
>>> to a large room with a screen and about sixteen chairs. Joe and I get
>>> comfortable and leave a space between us to fit the stroller. After 
>>> about
>>> five minutes, a doctor and a social worker enter the room. They sit 
>>> across
>>
>>> from us but also leave a space between the two of them.
>>>
>>> The doctor begins to talk and I listen intently on what he is saying. He
>>> has a Peruvian accent and is small, with brown hair, a mustache and is
>>> about sixty five years old. He gets about four sentences out ( I think 
>>> it
>>> is an introduction) and places two sheets of paper on the table. I can't
>>> take my eyes off the paper. I am afraid to look over at Joe because I
>>> suddenly know where the conversation is headed. In the middle of both
>>> papers, he highlighted in pink two phrases. Paper number one has the
>>> words, "Mentally Retarded" in cotton candy pink right under Hepatitis C.
>>> Paper number two has the phrase, "Brain Damage" in the same pink right
>>> under HIV. I remind myself to focus and look back at the doctor. I am
>>> still smiling.
>>>
>>> He says about three more sentences when something sparks in my brain.
>>> First it is hazy, foggy, like I am swimming under water. I actually 
>>> shake
>>> my head a little to clear it. And then my brain focuses on what he just
>>> said.
>>>
>>> I put my hand up. "Stop talking for a minute. Did you just say that 
>>> Amelia
>>
>>> shouldn't have the transplant done because she is mentally retarded. I 
>>> am
>>> confused. Did you really just say that?"
>>>
>>> The tears. Oh, the damn tears. Where did they come from? Niagara Falls.
>>> All at once. There was no warning. I couldn't stop them. There were no
>>> tissues in conference room so I use my sleeve and my hands and I keep
>>> wiping telling myself to stop it.
>>>
>>> I point to the paper and he lets me rant a minute. I can't stop pointing
>>> to the paper. "This phrase. This word. This is why she can't have the
>>> transplant done."
>>>
>>> "Yes."
>>>
>>> I begin to shake. My whole body trembles and he begins to tell me how 
>>> she
>>> will never be able to get on the waiting list because she is mentally
>>> retarded.
>>>
>>> A bit of hope. I sit up and get excited.
>>>
>>> "Oh, that's ok! We plan on donating. If we aren't a match, we come from 
>>> a
>>> large family and someone will donate. We don't want to be on the list. 
>>> We
>>> will find our own donor."
>>>
>>> "Noooo. She-is-not-eligible -because-of-her-quality-
>>> of -life-Because-of-her-mental-delays" He says each word very slowly as 
>>> if
>>
>>> I am hard of hearing.
>>>
>>> "STOP IT NOW!" The anger is taking over. Thank God. Why did it take so
>>> long to get here?
>>>
>>> The social worker is writing some things down. Not sure what. She 
>>> casually
>>
>>> gets up to take a call. My eyes follow her to the phone and I see Joe's
>>> face. His mouth is open, his face is pale and he is staring straight 
>>> ahead
>>
>>> of him at the white board.
>>>
>>> Rage fills the room. I point in his little, brown pudgy face. "Do not 
>>> talk
>>
>>> about her quality of life. You have no idea what she is like. We have
>>> crossed many, many road blocks with Amelia and this is just one more. 
>>> So,
>>> you don't agree she should have it done? Fine. But tell me who I talk to
>>> next because SHE WILL HAVE IT DONE AND IT WILL BE AT CHOP."
>>>
>>> I see the social worker quickly writing down what I just said. Joe 
>>> hasn't
>>> moved. Amelia is still asleep.
>>>
>>> The social worker decides to join the conversation. "Well, you know a
>>> transplant is not forever. She will need another one in twelve years. 
>>> And
>>> then what? And do you have any idea of the medications she will need to
>>> take to keep her healthy?"
>>>
>>> I speak through gritted together. "YES, I HAVE DONE ALL MY RESEARCH."
>>>
>>> She smirks a little. "Well, what happens when she is thirty and neither 
>>> of
>>
>>> you are around to take care of her. What happens to her then? Who will
>>> make sure she takes her medications then?"
>>>
>>> In a voice that mimics hers, I snort, "Well, what happens if you die
>>> tomorrow? Who will take care of your children? Your responsibilities at
>>> work?" She breathes in and her eyes widens. "Right!" I throw at her.
>>> "Neither of us can predict the future and we shouldn't try. But if 
>>> Amelia
>>> does not have this transplant she has no future!"
>>>
>>> The doctor interrupts. He puts his hands up and tries to take a stern
>>> voice with me. "These medications she has to take after the transplant,
>>> they are very dangerous. They can cause seizures. We have to get the 
>>> dose
>>> exact. They may cause brain damage."
>>>
>>> "DO OTHER CHIILDREN WHO HAVE A TRANSPLANT TAKE THIS MEDICATION?"
>>>
>>> "Yes, but it is different for her. She is already brain damaged and
>>> mentally retarded."
>>>
>>> He pauses as if he is choosing his words carefully. "I have been warned
>>> about you. About how involved you and your famliy are with Amelia."
>>>
>>> The devil himself could not have produced a more evil laugh. "Ha! 
>>> Warned!
>>> That is funny! You have no idea."
>>>
>>> I am beginning to realize I want this over with so I can move onto the
>>> next person who will help me with the transplant. So I say the words and
>>> ask the questions I have been avoiding.
>>>
>>> "So you mean to tell me that as a doctor, you are not recommending the
>>> transplant, and when her kidneys fail in six months to a year, you want 
>>> me
>>
>>> to let her die because she is mentally retarded? There is no other 
>>> medical
>>
>>> reason for her not to have this transplant other than she is MENTALLY
>>> RETARDED!"
>>>
>>> "Yes. This is hard for me, you know."
>>>
>>> My eyes burn through his soul as if I could set him on fire right there.
>>> "Ok, so now what? This is not acceptable to me. Who do I talk to next?"
>>>
>>> "I will take this back to the team. We meet once a month. I will tell 
>>> them
>>
>>> I do not recommend Amelia for a transplant because she is mentally
>>> retarded and we will vote."
>>>
>>> "And then who do I see?"
>>>
>>> "Well, you can then take it the ethics committee but as a team we have 
>>> the
>>
>>> final say. Feel free to go somewhere else. But it won't be done here."
>>>
>>> They both get up and leave the room.
>>>
>>> I look at Joe who is sobbing trying to get the stroller and Amelia's
>>> backpack. I break down with him before we head to the parking garage.
>>>
>>> I hope you are disturbed, troubled, distressed, and pissed off when you
>>> read this. I hope you share it with many, many people. Although I did 
>>> not
>>> know this yesterday, this is very common and happens across the map. I
>>> have researched and researched and researched transplants and the MR, as
>>> they are called in the medical journals, and it is appalling. We are in
>>> the year 2012 and my child still does not have the right to live, the
>>> right to a transplant, because she is developmentally delayed.
>>>
>>>
>>>
>>>
>> http://www.change.org/petitions/executive-vice-president-and-chief-developme
>> nt-officer-allow-the-kidney-transplant-amelia-rivera-needs-to-survive
>>>
>>>
>>> Jo Elizabeth
>>>
>>> "How far you go in life depends on you being tender with the young,
>>> compassionate with the aged, sympathetic with the striving, and tolerant
>>> of the weak and the strong.  Because someday in life you will have been
>>> all of these."--George Washington Carver, 1864-1943, American scientist
>>> _______________________________________________
>>> blparent mailing list
>>> blparent at nfbnet.org
>>> http://nfbnet.org/mailman/listinfo/blparent_nfbnet.org
>>> To unsubscribe, change your list options or get your account info for
>>> blparent:
>>> http://nfbnet.org/mailman/options/blparent_nfbnet.org/kflsouth%40gmail.com
>>
>>
>>
>> _______________________________________________
>> blparent mailing list
>> blparent at nfbnet.org
>> http://nfbnet.org/mailman/listinfo/blparent_nfbnet.org
>> To unsubscribe, change your list options or get your account info for
>> blparent:
>> http://nfbnet.org/mailman/options/blparent_nfbnet.org/melissa%40riccobono.us
>> -----
>> No virus found in this message.
>> Checked by AVG - www.avg.com
>> Version: 10.0.1416 / Virus Database: 2109/4757 - Release Date: 01/21/12
>>
>>
>> _______________________________________________
>> blparent mailing list
>> blparent at nfbnet.org
>> http://nfbnet.org/mailman/listinfo/blparent_nfbnet.org
>> To unsubscribe, change your list options or get your account info for 
>> blparent:
>> http://nfbnet.org/mailman/options/blparent_nfbnet.org/angie.matney%40gmail.com
>>
>
>
> _______________________________________________
> blparent mailing list
> blparent at nfbnet.org
> http://nfbnet.org/mailman/listinfo/blparent_nfbnet.org
> To unsubscribe, change your list options or get your account info for 
> blparent:
> http://nfbnet.org/mailman/options/blparent_nfbnet.org/jopinto%40msn.com
> 