Welcome to Just Juniors

In September of 2008, my 7th daughter Samara was born 9 weeks early. 4 weeks later, she was diagnosed with Down Syndrome. My self-therapy in learning to fully embrace her diagnosis involved designing t-shirts that portrayed Down Syndrome in a positive light. It is from this that my business, designing disability awareness products, has grown.

Saturday, January 14, 2012

A Life Worth Living? Apparently Not.

Today I was saddened, sickened and disgusted to read the story of little Amelia. At just under 3 years of age, her doctor at Children's Hospital of Philadelphia has deemed her life as unworthy. Why? Because she has been deemed unfit for a much needed kidney transplant. Not medically unfit, mind you. Intellectually unfit. That's right. Because young Amelia has Wolfhirschhorn Syndrome. A genetic disorder that has left her with an intellectual impairment. Or, as her doctor so lovingly put it "mental retardation".

What gives ANYONE the right to put a value on someone's life? Much less, to exercise their power to bring that life to an end, against her parents wishes, just because they can? Further, this family isn't even asking to go on a donor waiting list, they are lining up to be tested and donate their own kidneys. Not that this should be an issue either. After all, even with the donor lists, what makes one persons life more worthy of being saved than another's?

And, can you believe, that this doctor had the audacity to tell her parents that “I have been warned about you. About how involved you and your famliy are with Amelia.” I beg your pardon? Warned about parental involvement? Now that really got my hackles up! Shouldn't we be more concerned about parents who are NOT involved in their children's care?

Be sure to head over to CHOP's Facebook page and add your voice to the thousands there who are letting them know just what we think! http://www.facebook.com/ChildrensHospitalofPhiladelphia

Then head over to http://www.change.org/petitions/childrens-hospital-of-philadelphia-allow-the-kidney-transplant-amelia-needs-to-survive# and sign the petition to get Amelia the surgery she needs and deserves.

Here is my post from their Facebook page:

I am mentally retarded. Compared to the likes of Einstein, my IQ counts for not a lot. Of course, even Einstein's teacher labelled him as intellectually inferior. I guess if he had needed surgery at CHOP he would have been denied too! Out of curiosity, at what level is someone deemed unworthy? Presumably, my level of "retardation" isn't as pronounced as my daughters (who has Down Syndrome), but, from the evidence I have seen, it is not as pronounced as this doctor's, this social worker's, or this hospital's either. So, I am still left wondering what the magic number is that makes one person's intelligence more worthy than another's.

1 comment:

  1. I was a little kid and I found the photo album with my baby pictures and a fairly good picture of my hospital band which said "baby" and had my last name instead of my name, I asked my about this and my mother said "The doctor's told us not to name you for the first few days, because they didn't expect you to live and thought it would be easier on us (my parents) if I did not have a name when I died.
    Seems from the post at Philly Children's that the sick and twisted attitude of some medical professionals still exists.