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I am Alfie Evans

by | Apr 26, 2018

By Leticia Velasquez, Co-founder of KIDS (Keep Infants with Down Syndrome) and author of “A Special Mother is Born”

I am Alfie Evans. Unlike Alfie’s, my genetic anomaly is known. It has a name: Down syndrome.

When you devalue Alfie Evans’ life because of his bleak prognosis, and when you seek to take away his parents’ God-given rights to secure better treatment, you devalue my life, which is still in jeopardy.

You say there is no cure for Alfie’s condition. There is no “cure” for mine, either. That does not make my life less valuable, less important, less significant.

Yet up to 99% of babies like me are aborted in places in Europe. Iceland brags (and that is not too harsh a description) that it will be “free” of Down syndrome because this anomaly can be discovered via prenatal testing with deadly accuracy.

Seems that not many moms and dads want to raise a child with my issues: heart and intestinal defects, flattened face, short fingers and toes, increased probability of leukemia, diabetes, and Alzheimer’s, reduced intelligence, increased probability of obesity, and thyroid problems.

I cost the state much more money than a typical kid (those who stay out of prison and drug rehab, that is). I need special education and therapy, housing and assistance at many if not all stages of my life.

So much so that many powerful people (like the UN) have done the cost/benefit analysis and have determined that ending my life is more cost effective than giving me expensive care.

Up until till two decades ago, children like me were left to rot in state institutions. Sometimes my parents signed a death certificate, relinquishing all responsibility and all connections to me.

Not many people know that the dress rehearsal for the Holocaust of 6 million Jews started with programs like the T4 Program to have people like me (whom they labeled “useless eaters” )killed by my own doctors, by starvation, by cold exposure, or by lethal injection.

Later they tried out the gas chambers on us, saving our clothing, of course. That was worth something.

Sound familiar?

Today aborting us is considered by some a human right. But I ask you, are we that threatening to your happiness, that you can’t just let us live?

Alfie Evans is all of us, whether we have a disability now or not. We forget that most everyone of us will at some point in our lives be sick or feeble, have diminished capacity for self care, or forget who we are.

We will be considered a “burden” by those who pay our bills, whether family or the state, and will be “helped” to die.

Quickly.

Cost effectively.

Quietly.

But there is hope if only we heed the words of poet Dylan Thomas.

“Do not go gentle into that good night.

Rage, rage against the dying of the light.”

We who are Alfie Evans will rage for you, and against those who would usher you too soon into that good night. We will rage because we, too, are Alfie Evans.

Categories: Down Syndrome