Brief Update…
Almost three weeks after our initial visit, we returned to CHOP to hear the hour long presentation about kidney transplants.The presenter discussed the risks for Amelia and the donor, and although they would be scary to any parent, there were no risks that raised any red flags that Amelia should not have the transplant done.

But what I really want to do is thank the thousands of you who have supported us on this unexpected journey. It is evident through the comments on the blog, the petition site, facebook, twitter and the many private emails we received that the majority of people in this world are kind, caring and compassionate. We have seen the kindness of strangers, the compassion of our community, and the benevolence of people in powerful positions succeed at making a difference in our lives and the lives of so many others. I need to say a special thank you to those of you who have personally reached out to us to donate your own kidney for Amelia. Please consider contacting a wonderful site called floodsisters.org. Their foundation is amazing and organ donations, as many people have told us in many responses, are in high demand.

We (and by we, I mean the thousands of you who spoke up with letters, comments, petitions, and phone calls-all I did was write our story) came together, voiced our concerns and people listened.   Changes have been made.

THANK YOU!

The Rivera Family

http://www.thefloodsisterskidneyfoundation.org

 

20 Responses to Thank you!

  1. Beth says:

    Please forgive me for being confused. Does this update mean that Amelia’s Drs/Hospital has agreed to do the transplant? I am assuming yes as of the meeting about the transplant that her parents went to. Prayers & Blessings! Beth :)

  2. Lara Seay says:

    i don’t know if you’ll even read this comment, but reading your story made me feel compelled to tell you my own. in 1999, when i was 20 years old i was waiting for my second kidney transplant at Virginia Commonwealth University,(a large teaching hospital in Richmond, VA considered to be top notch) where i had been a patient since i was 11 and had received my first kidney transplant at age 14. My mother had been my first donor and now my father was a match. During a meeting with the transplant coordinator, i expressed some anxiety and fear about support after the transplant. From experience after my previous transplant, i knew that i’d have to return to the transplant center everyday even after i’d been discharged from the hospital although i wouldn’t be able to drive. as well as pick up meds from the pharmacy and remember to take them, 5-6 times a day while doped up on pain medication , i’d been a child back then and my family had taken care of me. it was a completely appropriate concern but the transplant coordinator, instead of empathising and looking for a solution, told me in a very condescending and snotty tone ” i’m hearing you say that mommy did this for me and gramma did that for me, and if you can’t take of yourself then we don’t have to do this for you” She actually said that “we don”t have to do this for you” as if it were her kidney to give me or like it was a favor, not something that my private insuranse that i had to skip college to work in a call center in order to have, was paying their very large bill for. I have never been as angry as i was in that moment, and i put up with alot at that transplant center. And the thing is, i was a prime candidate for transplant. i was young and healthy with no diseases other than kidney failure. The original disease that attacked my native kidneys had never returned and i was in good shape. My father was a good match. And this women was talking about keeping me from my transplant instead of just arranging for a home health care nurse for after my discharge. I left that transplant center that day and i never went back. I found a smaller community hospital with a transplant center that accepted me. Of course at that point i was so sick i had to start hemodialysis, which was miserable, and it took some time to go through all the steps again at the new place. The center there treated me with respect and i love and trust my doctor, something i had never experienced before. We are a team, it’s not a dictatorship. I’m 33 yrs old now, i;ve had my kidney for 13 years this year, which is 5 more than at VCU. I went to nursing school after my transplant, and now i’ve been a pediatric RN for 8 years. i do everything i can to protect my patients from doctors and nurses like the transplant coordinator that day. People who think they know everything because they have learned about a disease but know nothing at all about living with it, or caring and loving a child with it. In my time as a nurse i’ve encounter many kind and loving medical professionals, but unfortunately in my time as a patient i’ve also encountered many callous and unkind ones too. They develop an inflated sense of their own importance and forget that they are there to help people and improve there quality of life. I’ll be honest, kidney transplant is not a cure, it’s a treatment and sometimes it’s hard. It requires diligence, but so does dialysis and it is the donors kidney to give and their (and your)decision to make. Your daughter is fortunate to have you as an advocate and i wish you luck

  3. Anonymous says:

    my family and i have been praying for amelia and with jesus anything is possible. keep praying and god bless

  4. Dorothy Da silva says:

    Let me start by saying,may the LORD continue to bless you and your family. I was so hurt when i first read the story about little Amelia that i started to cry, you see i have a 7 year-old niece Savannah who is the love of my life! savannah can not walk,talk,set,stand or crawl. the only way she can eat is with a bottle – her only source of nutrition is pedisure with fiber.savannah has cerebral palsy – she had a grad 4 bleed on her brain. but savannah has the most contagious laugh,it sounds like “ELMO” LOL. she also loves music, she has a way of moving her arms & legs to the beat while smiling and giggling, its truly something to see.when she was born the Doctors told my sister to go and start making arrangements because she would not make it. well my family decided that, that would be up to GOD to make that diction and no-one else! SAVANNAH is our little miracle and AMELIA is yous. continued blessings and much love Dorthy…

  5. Letty says:

    I’m so happy for you all.

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