Sign the petition – give Lily a new heart

I was listening to some people talk about language the other day. They were discussing racial slurs and slurs aimed at the special needs community.

They seemed to agree that racial slurs were not ok under any circumstances, but when it came to special needs slurs (we all know which R word I am referring to) they seemed to think there was less of an issue.

Their attitude was that we can only cross one bridge at a time, as if it were too much for people to adjust their language on multiple insults instead of just the one. Gosh it’s exhausting thinking of other people’s feelings isn’t it?

I thought about why this is. Why is it still ok to use special needs slurs, when other slurs land you in social exile?

And then I saw a link today that explained it. We have a culture, even in the most accepting of places, where having developmental delays and special needs makes you less worthy. It’s not just your average bigot who thinks it either. It’s our doctors, our governments. It’s the people making the decisions on how we spend our taxes. How else do you explain the need for this website?


Stephanie Parra is having to petition in order to save her daughter Lily’s life after doctors deemed her unsuitable for a heart transplant due to the potential for being developmentally delayed. Note the word potential, it’s not even confirmed, but that is besides the point, because why should it matter how fast she learns to walk and talk when it comes to a matter of life and death?

Lily was born with a heart defect and was put on a heart transplant list. Soon after, however, doctors discovered her brain wasn’t growing as fast as it should and she was taken off the list.

The enormity of that decision, denying her a healthy life because she may not progress at what we consider a “normal” rate, is horrifying.

There’s so much ableism and assumption in this idea. It’s eugenics wrapped up in a quality-of-life disguise and it makes me want to spit.

When Eva was born I didn’t know what her quality of life was going to look like. I told doctors they were to consult with me before going to any extreme measures to save her if something went wrong. I didn’t want them inserting a G tube without talking to me. I didn’t want them to resuscitate her without talking to me. I worried her conditions, her blindness, her deafness, her brain and heart issues were too much, that their presence in her life would make her life not worth living. I didn’t want her to suffer. I thought I understood that these conditions meant she would suffer. I was comparing my experience to one I cannot even begin to imagine because I do not live it.

I didn’t know what I was talking about. I meant well, but I didn’t understand. I didn’t understand that I don’t define quality of life. Even for my daughter.

Neither do you. We cannot define quality of life because we have only lived our lives. What brings me joy is not what brings you joy, even if we are both able bodied, hearing seeing beings. Within the world there is a vast variety of what quality of life looks like. The same is true in the special needs community itself. So who was I to decide that Eva would have no quality of life just because she couldn’t experience the world as I did? I had no right to decide that. Not then at least. Not with so many unknowns before us. Eva forced me to challenge my own ideas of what it was to be “normal” to be “whole”.  She forced me to see that life was not just how I saw it. She showed me that quality of life is not a line on a ruler that people have to meet.

But I can see now where these attitudes come from. Is it surprising that I thought the way I did when government organisations like health and education aren’t funding these areas? They aren’t important enough to fund fully, so why should the general population care either? Why should you even bother to understand the issue if governments and the people making the decisions are showing you it’s nothing important?

When push comes to shove, the funding disappears and Lily doesn’t get a heart transplant because she’s not deemed worthy.

Who are these doctors to decide that just because Lily has the potential for developmental delay, this child’s life will not be worth living? Or that she will not enrich and inspire everyone around her?

Lily is worthy. Eva was worthy. Every child is worthy, regardless of their test scores.

Help demonstrate that by signing this petition.





5 thoughts on “Sign the petition – give Lily a new heart

  1. Pingback: My next guest – Rachel Callander

  2. RJ

    Well said. I work in the PICU and this is horrific to hear…in fact, I’m appalled. I will be signing so Lily can have a chance to grow into a beautiful, special girl. Thank you for sharing.

  3. Jodie

    Signed. I feel so strongly about this one, for Lily, and personally, given the decisions overwhelmingly made over pre-diagnosis of Down Syndrome.

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