Quality of life-can you define it?

One of the main issues, as I see it, that has come out of the Amelia Rivera case, is the issue of quality of life.
Who determines what quality of life is?
How can we even define it?

My opinion is always going to differ from someone else's, so how it even possible to make this term a useful one? The term itself is bandied around by professionals all the time. Always at the supposed 'core' of what drives medical practitioners and professionals is to improve the quality of the life of someone with a disability, or medical condition. What usually happens, is that medical practitioners attempt to find the best medical solution based on their own personal experience and sometimes back that up with scientific evidence.
It is a clinical approach.

As parents, we are driven by emotion.
For most parents, children come first.
We would risk our own lives in order to save or protect them.
This is where a clash of opinion can occur.

Quality of life versus Quantity of life.
I just simply cannot generalise here.
For me, I will always opt for quality of life which I define as being, free from pain, happy, and able to function.
For me, I expect that Ryley will somehow let me know when his physical body has had enough.
I won't put him through anything I don't think will be beneficial.
But that choice needs to be mine.
It shouldn't be taken away from me.
As a parent, I am the one who is the 'expert' on my child. I am the one who cares for him, loves him and wants the world for him.
And I am the one who would give him quality of life, as well as quantity in any way I know how.
No other person, medical or otherwise, should be allowed to refuse to treat my son based on their own perception of his cognition or medical complexities.
And this is why there has been such outrage amongst the online special needs/disability community.
Lessening the value of another person's life is morally wrong.

There has been opinions expressed about how WHS is a 'heartbreaking disease' (I refuse to post the link to the article, but if you want it, just email me). WHS is NOT a heartbreaking disease. It is not something you catch. WHS is a chromosomal disorder that mostly occurs as a de novo deletion. In our case it didn't. I passed on the faulty genes. WHS is a complex syndrome, yes. There are children who have profound disabilities. But there are children who walk, talk, read, write...Most of all, kids with WHS are happy, social and beautiful and enrich the lives of all around them.


  1. "Quality of life" ..."Lives worth living"? When you do not care for and love a disabled person, it is easy to develop a set of criteria which judge the worthiness of a person. To us, life is . . .it is not complex. We do whatever is necessary to preserve it; we do what is necessary to alleviate pain. We now that life has value in and of itself; we know that all value of life is equal...the disabled are no more or less valuable than the most abled. We are ALL entitled to the same respect, empathy, kindness and love. To believe that some lives are more worthwhile than others reduces us to the animal kingdom...Darwin's survival of the fittest. I had hoped that our consciousness has evolved more over the generations. I fully agree with you....

    1. I agree with you. Of course. And as usual. Well written response Phil!

  2. Beautifully written! I don't have kids, but I came here through trying to learn about WHS, as I had not heard of it before her story. Of course it shocked me that a medical team was allowed to deny her. I wanted to learn more and hear from the point of view of a person in or near that family's "shoes". Thanks for sharing! Blessings to you and your family!

    1. Thankyou for your comment Anonymous. WHS is a complex syndrome. But I wouldn't swap Ryley for the world. He our heart, our soul, our everything.


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