It sure as hell pissed me off.
The Children's Hospital of Philadelphia's transplant team has denied a kidney transplant to a child because she is "mentally retarded." (those are THEIR words, not mine). Take a few minutes to read what happened when Amelia's parents faced the transplant team and were told her developmental delays made her life less worthy.
"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."According to Amelia's parents, "Mental Retardation" was listed as one of several contraindications for a transplant along with illnesses such as HIV and Hepatitis C. Amelia does not have HIV or any of the other disqualifying diseases (this has been confirmed by her mother). She is cognitively delayed and this transplant team has decided that her life is less worthy than the lives of other children.
Put yourself in their position. Imagine being told your mentally delayed, developmentally delayed child, your child with a rare genetic disorder is ineligible for a transplant because of something they can't control. This isn't a smoker who refuses to quit in need of a lung transplant. This isn't an alcoholic who refuses to get help in need of a liver transplant. This isn't a person in a "persistently vegetative state" being kept alive by machines.
This is a child with a disorder whose kidneys are failing and will die without a transplant.
I keep thinking about kids like Klaw. VLCADD can affect the heart & the liver. What if he one day requires a liver or heart transplant? Would he be denied because his condition cannot be cured? Will he be safe solely because he's not "mentally retarded?" Would he be placed ahead of someone else because he is cognitively typical and a transplant team deems his life as more valuable than another child with cognitive delays?
Do you want to take action? Sign the petition at Change.org.
Share these posts & the petition every where you can. Tweet your support with the #TeamAmelia hashtag. Blog about #TeamAmelia and the fight for the rights of special needs individuals.
CHOP's response to allegations that they denied Amelia's transplant based on "cognitive ability."
CHOP's response to allegations that they denied Amelia's transplant based on "cognitive ability."
UPDATE :: 30 JAN 2012
