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
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Your story touched a tender spot in the heart of every special needs parent who heard it. I am so happy for you, and incredibly proud of our SN parenting community for the way it rallied around you. We all are blessed for having the opportunity to support you by making noise about this injustice. Be well.
I am so happy things are moving forward for you guys! I will continue to support you all and send all the positivity I can!
No problem told everyone I knew if it were my son I know I would get the same support! There is no greater power then that of a pissed of parent!! So happy that Mia will be getting her transplant and I will continue to pray for your family in your journey! Mia will always have my suppport may things run much smoother for you all from here on out!!
I am so happy to hear things are begging to come together for you.. i still hope and pray for the same results for my daughter Faith who has been declined a heart transplant twice.. The first time she was declined, she was going through a mild case of heart failure and was blessed she recovered..I am very happy that Mia will be getting her transplant and I will continue to pray for your family in your journey.. Mia will always have my support, will continue to be in my thoughts and prayers.. May things run much smoother for Mia and the family from here on out!! Please feel free to contact me at anytime @ mamdy31877@yahoo.com or 240-793-1565.. I look forward to reading more great news! <3
So thankful for this wonderful news! I’m reminded of a woman that told y’all that something similar happened with her child at that hospital and she advised you to go to a different facility; that place would never change. Well, God surely used you guys to make big changes that will benefit not only precious Amelia now, but so many other SN children in the future! Many owe you a debt of gratitude for your perseverance. Keeping y’all in our prayers that the surgery goes well!
😀 I am so happy Amelia is having the operation. I hope all goes well.
I wonder how you will make amends to the nurses and caregivers at chop who will be reluctant to take care of your child now. Whether you realize it or not, you have alienated a large group of people and opinions have been formed. People are fearful now that you will run to the internet with names and situations whether they are based on truth or fact or not and they don’t want to be in the position of being falsely slandered by you. I wish you had thought of that too. What a shame that people will dread your admission now.
To “thetruth”,
What? YOU and those like you are the reason we sign petitions! You spread fear and hate. If you work with these special children in an even worse situation due to the need for transplant you should be fired. Your an “opinion” spreader and troublemaker. Honestly, get out of the profession.
We wish only good will to all and I believe most those that work with these children also wish only good will. You make the reason for community support a necessity.
@nancy: I believe (and agree with) “thetruth” meant that Amelia’s mother badmouthed the hospital and by extension the entire staff to the extent that they may not be willing to go the extra mile for Mia when (if) she has transplant surgery. This entire situation has been played out in the media and while the outcome was what she wanted, the mother should have been more circumspect in her attempt to get the hospital to reverse its decision not to offer the transplant surgery. In other words, the mother could have reached the same results without having an on-line tantrum because she didn’t get her way the first go-round. I know from experience that there are channels that can be utilized to appeal unfavorable decisions. The mother did not chose to go that route, but instead took her story to the media and the internet, the easier route to be sure, but also the lazy route, IMHO.
I would also note that you are being hypocritical when blasting thetruth for voicing her/his opinion, that thetruth “and those like you” is the reason you had to sign a petition. “thetruth” is not spreading hate but merely pointing out the reality that Mia may not receive the best of care because of the mother’s actions of taking her side of the story to the internet. The hospital and its staff are banned by law from responding about this child’s situation, yet the mother was and is able to scream and rant and rave all she wants regardless of whether or not what she is saying is true … there is not one person able to contradict or correct her assertions.
There is/was no hate or fear mongering involved in thetruth’s post, the hate is from you.
To those who think that Mia’s mom sought out the media to promote her story about Mia ~ she didn’t.
To those who think that she bad-mouthed the entire hospital CHOP in her post, please re-read it~ she didn’t.
To those who think that she set out to destroy reputations of doctors and specialists at CHOP~ she didn’t.
To those who think that she was having a on-line “rant” about the hospital or specific doctors in the hospital ~ she didn’t.
To those who think that Chrissy’s mission is to change transplant rules to prioritize Special Needs children over the general population ~ it isn’t,
To those willing and able to see the entire truth of a situation~ here it is:
Chrissy had a horrific experience at a major children’s hospital~ a hospital she has depended on to provide her child (and has provided her child) with life-saving medical care.
She wrote an emotional response about the outcome of that meeting on a web site dedicated to parents of children who share the same rare syndrome and whose readers already knew of her kidney concerns~ NOT on facebook. NOT on Twitter. Not even through a personal blog.
She wrote it HERE~ At Wolf-Hirschhorn.org, a site dedicated to providing an outlet for parents who are celebrating, fighting, fearful, excited, angry, and/or confused about what to do regarding the specialized needs of their child. A site few knew before the story went viral.
How did it go viral?
Those of us with cognitively challenged children; those of us with children with Wolf Hirschhorn Syndrome; those of us with children with Trisomy 18, Down Syndrome, Autism…you name the disability…were OUTRAGED that the parents were denied the basic right to receive a proper hearing with the transplant team on the basis of a diagnosis of Mental Retardation.
We cried with Chrissy…and WE SHARED HER STORY.
Why? For most of us, it was to share the news that this sort of discrimination existed– even in the most prestigious institutions and against the most vulnerable in our society. We shared with our friends– people who would understand that this is not just about Mia but could be about our own.
And they shared the story with their friends.
And those people shared the story with their friends.
And those people wrote blog posts about it and linked it to other blogs.
And people misread/misinterpreted/ misunderstood some of the facts presented in the original post and began flooding CHOP’s web site with complaints…creating new accusations and debating issues not even addressed in the original story,
Strangers contacted media outlets through personal connections they had.
Bloggers swamped the “blog-o-sphere” with the news of Mia’s meeting with the transplant team at CHOP and cried foul.
And all of this happened without a word, action, or call from the Rivera’s. All she did was tell her story to her inner circle.
Let’s be crystal clear: THE MEDIA CALLED THEM!
So it makes me sad that so many people are attacking a mother who simply wrote a personal story whose goal was to reaffirm to us (who already knew the kind of mother she is) that she was standing up for the rights of her child to be given the option for life; she was standing up for her rights as a mother to be given all options to decide the best course of treatment for her daughter.
It makes me sad that there are so many people abusing our site as a means for attacking a family for doing what EVERY family should be doing– standing up for their child.
To write in comments that blame this family for things they are not guilty of doing are misdirected and do nothing but add hurt to an already difficult, emotional situation.
To us and our community, the Rivera’s are heroes…for just being them.
To those looking for a place to point fingers and people to accuse of sullying CHOP’s reputation, risking the relationship Mia shares with her doctors as a result of the media firestorm, or bringing attention to the fact that maybe, somewhere out there, a child with special needs deserves the chance for life through transplant as much as anyone else…
Point it at me. I will take the blame. I will take your heat.
Point it at the thousands of people who reacted to her story and caused the media firestorm by sharing her post again, and again, and again.
Point it at those in society who do not recognize that we need major changes in our acceptance of those with disabilities– of all sorts.
Point it at those who do.
But do not point it HERE.
HERE is a place where parents and families of children with Wolf Hirschhorn Syndrome support, love, and share in one anothers’ lives. HERE is a place where it is not appropriate nor acceptable to “dislike” a comment of support and, instead, encourage posts promoting separation, disaffection, and a lack of compassion for those who are different than the majority,
If you do not wish to join our community of support, then please…
get out of HERE.
Luna,
What you say may be, sadly, true about the impressions of the doctors going forward. However, you and many of the writers here need to understand one very important, significant fact: Chrissy did not seek out the media’s attention. The media found her.
What did Chrissy do? She wrote an emotional response on a site dedicated to children with Wolf Hirschhorn Syndrome~ a site no one outside of our online “family” knew existed. She didn’t write about it on facebook. She didn’t link the story to a blog outside of here. She didn’t tweet about it. All she did was write her story as she experienced it.
We all know Chrissy; I am blessed to know her personally outside of the online world. She is an amazing mother. She has fought for her daughter since day one, and this post on WHS.org that went viral was merely an extension of her declaration to us that she will continue to fight for her child. What made this story touch so many of us was the exclusion of options given to the Rivera’s on behalf of their daughter– merely because of a diagnosis of Mental Retardation. Were there other concerns? Yes– she acknowledged that the doctor mentioned medications in the meeting; but when told that their daughter was not a candidate for even a family-donated kidney, the only reason he focused on was the MR diagnosis.
THAT is what our community got so upset about.
THAT is why she wanted us to know about it.
THAT is why WE shared the story with our friends on facebook, twitter, in our blogs, etc ~ because we understand that Mia could be our child one day…and apparently, it hit a nerve.
What happened next is that the story went beyond the WHS community and into the Special Needs community at large. Parents of children with Autism, Tursomy 18, Down Syndrome, and other rare syndromes picked up the cause because, like Mia, our children have too often been considered disregarded because of their condition. If you read through stories on this site and blogs, more than a few of the mothers were told at their child’s birth to essentially “let them die.” Today, those same children are thriving under their family’s care– care like that which Mia receives from her mother, father, brothers and extended family.
Her story became public because WE…not she…wanted it to be. The unfortunate impact is that Mia MIGHT be the victim of unwilling doctors who are afraid of upsetting her parents, even if those parents have never done anything but praise the care provided their child in the past. That would be sad.
Also sad is that people now come to our site~ a site dedicated to offering love and support for the families with children with WHS…a site that was once a safe place to share our children’s successes and challenges with others who care…into a place where strangers feel it is in any way okay to “dislike” someone’s comment of support for Mia in exchange for angry debate that twists facts and misdirects frustration against the innocent.
Anonymous:
What is sad is that you, friends of Chrissy, friends of Mia, are the ones to blame for the internet fiasco surrounding this child. You, and every other person “out there” should know by now that once something is posted, it is on the web forever, whether you wanted it to be or not and whether you wanted it go viral or not. I think you were hoping Mia’s story would go viral to force the hospital and doctor to reverse their decision, but you weren’t prepared for the backlash the anonymity of the internet brings. (Witness the Catsourous family in California who have tried in vain to get the photos of their daughter’s fatal accident off the internet.)
I make no apologies for my standing up for thetruth, nor do I make apologies for my opinion that Chrissy’s post was a rant, an internet tantrum that the doctors and medical staff were unable to defend against due to HIPAA laws. Had she presented her side of the story and released/ requested the doctors and staff to present their side in the same forum I would not hold that opinion. I am a firm believer that anyone accused of wrongdoing has the absolute right to defend him/herself; in this case, however, that right was not afforded the doctor or the hospital and we only heard one side.
I have stated previously that this is a horribly sad situation and I truly hope Mia gets her transplant, but I remain committed to the proposition that everyone deserves to be heard, whether you agree with them or not and vice versa. If you do not agree, that is fine, but please realize that my opinion is just as valid as yours. You and your friends put this situation “out there” for the world to see, and as such, you and they are 100% responsible for any backlash, not me and not anyone else who has posted an opinion or thought you disagree with.
(As an aside, I find it rather curious [telling?]that you post as “anonymous” while others who have nothing to hide, like me, use their real names.)
The one positive in this situation is that people have been made aware of WHS and THAT can only be a good thing for children like Mia.
Luna,
I do not think anyone accused you (or others of dissenting opinions) of causing the backlash. As a community, we are very protective of our own. Scratch one, and we all scratch back. Do not take the comments personally, but do recognize that while everyone is entitled to an opinion, there are appropriate and inappropriate forums through which to do so. I agree that this is not that place; this is a support network #1. Some people, ironically people who didn’t even know the people involved personally, did cross some lines in spreading the story. Mis-truths were fed and accusations were lodged against the hospital which were the result of emotional response and not logical thinking of the long-term aftermath. Like you, I pray that Mia gets her transplant and that medical professionals do not compromise their professional integrity at her expense. A lot has been learned as a result of Mia’s story; I think we have all grown as a result.
Luna – Please leave our site. I’m not afraid to share my name. I did not write the post.(I would tell say if I did.) BUT… Anonymous posts have been put here before. Not because we don’t want to reveal our identities, but because we speak as a group. Anonymous posts… are posts from the heart of our WHS families. We don’t expect you to understand, but your voice has been heard here. Please go bash someone else for awhile.
This comment is from KRISTEN, mother of ALEXANDER.
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 🙂
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
my family and i have been praying for amelia and with jesus anything is possible. keep praying and god bless
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…
I’m so happy for you all.