UPDATE: 50,000 people signed this petition, which garnered media attention from USA Today, ABC, CBS, Fox News, TIME, and the Washington Post. Amelia received her transplant! Read more:
They are denying it BECAUSE she is disabled…even though her parents want, and understand the risks and the post-treatment, CHOP will allow this little girl to die because she does not meet some boards image of a quality of life. Read the article here:
Learn more about Amelia’s condition at:
And, yes, I did get chills when I read the child’s name was Amelia. Kudos to Amelia’s parent for fighting for their baby. Thanks and gratitude for the 2 disabled angels in my life that have brought me untold joy and change for the better beyond my wildest imaginings.
Before you go say something like how this is something we can choose for others, I ask you, where is the slippery slope? Where is the line of what’s an “acceptable” level of mental ability? Who gets to make that decisions, because I seriously doubt I’d take that decision by almost any of our current crop of elected (ahem) officials, given their complete lack of competence.
AJ Hall says
I think that is inhuman!
Simone Defrenne says
I do not understand how in this day and age discrimination like this can still be happening? particularly in the western world. My daughter spent the first 6 months of her life in intensive care and underwent many serious (and expensive operations). I was extremely lucky that at my state pediatric hospital (Princess Margeret-in Western Australia) the doctors fought as hard for her life as my tiny daughter did herself. They did this although at the time she had failed all her hearing tests, she hooked up to a breathing aid, and she was constantly being stimulated to shock her tiny body to life! Fast fwd 3 years and this little girl has defied all her critics and is a happy healthy and wonderful child. She is developmentally delayed yes, but she is the most amazing person ever, she is a gift as is every child…There needs to be serious law reforms-especially when they contradict the most basic of civil liberties-a child’s right to life!
Simone, I’m so glad for your story! It seems odd – I’ve heard of lots of extraneous methods to save newborns – and that’s a good thing! Imagine if a doctor today said, “just let the baby go.” Unheard of! So I don’t understand what’s up with this…has she passed a certain age that she is no longer measure by her life, but by her brains?? My 2 cents.
Andrea S. says
I found your post via SpecialChildren.about.com’s collection of links on the Amelia Rivera situation.
Thank you for blogging on this. I, too, have now blogged about it and have signed the petition and left a comment on CHOP’s facebook page.
You may be interested in knowing the the organization “Not Dead Yet” has also blogged on this. This is an excellent organization that campaigns to educate medical personnel and the general public that, no, a disability does NOT diminish a person’s capacity to enjoy life and that, YES, the lives of people with disabilities ARE worth living. It’s sad and frustrating that some people actually need to be taught this, but Not Dead Yet is helping in that task: http://notdeadyetnewscommentary.blogspot.com/
Thank you Andrea! Don’t you find it ODD that we have to have an organization to educate medical personnel about how disabilities affect a person’s quality of life? I’ve had some WONDERFUL, life-saving doctors in my life, but I’ve also had doctors that looked down on my opinion as a person. I think good ones are hard to find, and I’m sad that the medical community can be so short-sided so often. Thank you for sharing the article!
As I look at my soon to be 13 year old daughter with disabilities this AM, I remember when she was much younger and a specialist told me that she would never walk, would always need a feeding tube, essentially have no quality of life – how wrong he was!! How can any doctor in his/her right mind pass judgment that any child be denied a kidney transplant?! It is an unacceptable practice that must be stopped! Stay fighting knowing there are many standing with you!
I agree! It’s not just that every doctor can’t possibly foresee every medical and therapeutic development, it’s also that those doctors don’t know the dedication and sacrifice parents are willing to make to help their kids with disabilities beat every freakin’ “odd” that is thrown at them. Don’t they recall that once upon a time, it was the doctors who said, “This child has Down’s syndrome/autism/put-your-need-here, you’ll have to institute him/her, there’s nothing else you can do”? And fine folks like Temple Grandin’s mother and other rejected that, and changed the face of a disability for good. Sigh. How sad to be one of those doctors.
Lots of hospital doing this one and lots of them are denying about the inhuman behavior. Its really sad to know all of this and really I will sign a petition to this one.
Angel Collins says
It’s a sad thing to know that still, a lot of institutions are making that kind of act towards developmentally challenged children. I think that they should make some consideration and still treat these children like any other children. This is so nice of you to have an advocacy protecting these lovely and God-given children. Thanks and keep it up!