I am BEYOND sickened by this.

by debi9kids on January 13, 2012

My friend Sunday posted a link on her Facebook page about a little girl named Amelia with a rare disorder called Wolf-Hirschorn Syndrome that is being denied a life-saving transplant by Children’s Hospital of Philadelphia because “she is mentally retarded”.

What the hell?!?

I would love to say that it takes a lot to piss me off, but the truth is, I can have a very short temper and quite frankly, this pisses me off.

As a parent who has taken a few of my children to CHOP for various specialists and surgery and knowing a dear friend’s daughter is being treated for her cancer there as well, I.am.appalled.


And, as a parent of more than one disabled child, one of whom is severely disabled, the idea that any institution would tell me or anyone else that my child’s life isn’t as valuable as the next child is not only offensive, but scandalous.

Just who the hell do they think they are?

My stomach is churning over what this little girl’s family is enduring…
knowing their daughter could be saved if not for the fact that judgemental bureaucrats are deciding her fate based solely on dollars and cents.

You can not tell me otherwise.
I don’t care what garbage they think they’re spewing when they say:

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?

They are not basing their decision on Amelia’s well-being.

No chance of that.
How could there be????
They (the doctors) think it would be better for Amelia to die than live to be “a burden” later on.

What a huge bunch of crap!

I am telling you as a mother, there is nothing, and I mean nothing, I wouldn’t do to save the life of my child.

And to have anyone ever tell me that my child’s life isn’t worth living…
I would.not.accept.it.

I do not accept this.
Amelia deserves the right to live.
Her life has value.

If you are sickened by this,
if you agree,
if you feel moved to do something,
please sign this petition
or write the CHOP doctors a letter and tell them what you think of their discriminatory practices. ( patientrelations@email.chop.edu )

If you are moved to do nothing,
I pray you are never in a position where your child’s life is left in the hands of uncaring, selfish, judgemental bureaucrats who think it’s better for society for your child to die than be a burden.

God help us all.
What have we become?

*If you are skeptical, please read more about Amelia here.

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{ 16 comments… read them below or add one }

Kim January 13, 2012 at 3:23 pm

I signed and would do it 10000000 more times if it would help.


debi9kids January 13, 2012 at 3:26 pm

thank you! Sincerely.


mum-me January 13, 2012 at 3:29 pm

I've signed it too, from your FB link. This situation sickens me like few things have before.


debi9kids January 13, 2012 at 3:35 pm

me as well.
Beyond disturbed.
This is the same hospital that sees Will at their Autism Clinic.
How can they claim to "help" him in one respect and turn around and tell me his life isn't "worthy" in another? DISGUSTING.


Life with Kaishon January 13, 2012 at 3:59 pm

I am tweeting it right now. So sad. Thanks for sharing. I was just at CHOP today with one of my kids… I wish I would have said something when I was there.


Mary Ellen Mannix January 13, 2012 at 4:20 pm

I would like to help. Please share my info with the family and/or clinicians.


Heather January 13, 2012 at 5:34 pm

Tweeting it now. What have we become, indeed? I never thought CHOP would do that – they were the ones who helped save the life of Katie Musser (the 9 year old who weighed 10 lbs) when she came home from Bulgaria. I'm disappointed in them, to say the least.


Janis Cano January 13, 2012 at 6:32 pm

I signed the petition too…. OMG what a world this has become; I will be praying for this little girl and her family!


Dawn Wright January 14, 2012 at 5:32 am

I AM SICK!!!!!!!!!!!!!!!! How dare they?? IN THE U.S.???? ARE YOU SERIOUS????? This could be our child? This could be anyones child!!!! NOT ACCEPTABLE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Signed!!! And PRAYING!!!!!!!!!!!!!!!!!!!!!


lesa January 14, 2012 at 3:23 pm

this makes me sad. Signing the petition and then sharing this with my page!


Alisha January 14, 2012 at 6:30 pm

I have signed, and will for sure write a letter! So disgusting!


Rebecca Coyle January 15, 2012 at 10:18 am

So heart broken that we have come to a place in our society where medical life-saving medical decisions are made based on an IQ level. Her life is precious; the lives of all children are precious. We must endeavor to create a place of safety for our children.


Barbara Manatee January 15, 2012 at 10:24 am

So, so sad. 🙁 I hope the petition makes an impact!


Amy Agnew January 15, 2012 at 12:19 pm

Absolutely sickening! How do they sleep at night?!! Praying for Amelia!


Lisa January 16, 2012 at 1:27 pm

Of course i signed it..not sure if a Canadian signature counts..

I'm shocked by this hospital and by the doctor's callous words


Kerry January 17, 2012 at 1:20 pm

FYI….local Philly 6 ABC Action News just aired a story on Amelia and CHOP's denial of kidney transplant. Still so sad, disheartening and just down right wrong. Also discouraging and disappointing to me as we take our 6 yr old to CHOP for yearly evaluation of her rare congenital anomaly called Klippel Trenaunay Syndrome. We have always thought highly of the facility but now have a different view 🙁


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