[blparent] More about Amelia Rivera's Need for aKidney Transplant

Sun Jan 22 14:27:25 UTC 2012

Its true.
----- 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
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>
>
>
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