Nitty Gritty Dirty Grief

I still have a dream

This weekend I was reading through Facebook and came across a very disturbing post- a post that I had to think about and process for a while.

A transplant doctor at Children’s Hospital of Philadelphia (CHOP) is recommending to his team that they deny two year old, Amelia a kidney transplant because Ameila is “mentally retarded”.

“You can take it to the ethics committee but as a team we have the final say.” These were the final words of the doctor.

Kid you not. The family is not asking for a kidney- they have a donor within their family. They are asking for the surgery to be performed. He told them he will not.

It’s 2012 and we live in this amazing country but apparently some people ‘count’ more than others.

You can read Amelia’s denial for this surgery here.

You can also sign the petition to allow Amelia to have her life saving surgery here at

I read this on Saturday and felt awful for the family. I also selfishly thought to myself, Well, we don’t have to worry about that anymore.

And then my sweet Samantha, wherever she may be, came down and bonked me on the head. She reminded me that I promised to continue to be the voice for those who can’t talk, to work and advocate in her name.

And the more I thought about this, the more I knew I had to help spread the word. Thank you Lil’ Miss.

On MLK eve, I can honestly say that I did not feel discriminated because of Samantha’s illness but I also know were incredibly lucky. We were never denied a thing and worked closely as a team with her doctors. These doctors loved her and did whatever they could to make her comfortable and healthy.

…..but there were those times, those times when we had a new nurse or doctor, those evenings when the night staff was shocked by Samantha’s condition, when the words quality of life were thrown around…..I would think, you don’t know, you don’t know her, you don’t know us, you cannot make that judgement.

They made that judgement at CHOP on Friday.

And it is also times like these that I am proud to be part of a community that fights adamantly and honestly for their children, Facebook is blowing up, blogs are everywhere, the CHOP site is posting statements….this all happened on the heels of a long weekend, I’m sure the hospital Public Relations is going nuts.

As they should.

Granted, these were the words of one doctor and a social worker, this is not the overall opinion of CHOP. But if this woman had not spoken up, had not put this on her blog and facebook, the transplant would be denied and her daughter would have died.

And in the words of the great Martin Luther King, Jr; He who passively accepts evil is as much involved in it as he who helps to perpetrate it. He who accepts evil without protesting against it is really cooperating with it.

To our voices.

Happy Birthday Martin Luther King, Jr. May we all continue to fight the good fight.

1 thought on “I still have a dream”

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