Friday, January 13, 2012

"No Transplant for You....If You Have a Developmental Disability...."

wyatt and big brother ethan....
i'm back and i'm mad!!!   I AM LIVID!!!!    i had NO IDEA that my child would not be allowed to be placed on a transplant waiting list if, God forbid, he should need an organ transplant.  WHY????  BECAUSE HE HAS DOWN SYNDROME!!!!!   

tonight i was reading an article on the website, and my eyes were opened to this atrocity.  according to the genetics home reference website, wolf-hirschhorn syndrome is "caused by a deletion of genetic material near the end of the short (p) arm of chromosome 4..... and is a condition that affects many parts of the body. The major features of this disorder include a characteristic facial appearance, delayed growth and development, intellectual disability, and seizures."   you can read the entire story here, but basically these parents were told that their child would not be allowed to have a kidney transplant when the need arises (which is inevitable) BECAUSE SHE IS MENTALLY RETARDED......  WHAT?????    i'm talking about THIS VERY WEEK, in THE UNITED STATES OF be exact, at one of THE BEST CHILDREN'S HOSPITALS IN OUR COUNTRY.... children's hospital of philadelphia (chop).   OH.MY.WORD.  tim said, "we're not in the stone age....."    but it certainly seems like it.....  very hard to believe that this is the "norm" for our kiddos in this day and age.....
christopher "helping" mommy in the kitchen!

as this story is circulating online, i have read status updates from two of my online friends in our Down syndrome community who affirm the truth of this situation.    these two mamas have heard THE EXACT SAME THING!!!!    stephanie said "Several years ago, we were told that Christopher would never receive the transplants he potentially needed solely because of the fact that he has Down syndrome. We were told that they don't like to "waste the organs"."   oh dear LORD......why does the medical community have the ability to play god????   
big brother luke!  you can tell eli is crazy about him!!!
our friend dayna said "A month ago we learned if Luke's kidneys ever failed he would not be put on the donor list because he has Down syndrome. We were stunned to say the least. It's unbelievable that our child's life isn't as valuable as any other child. The world needs more people like Luke who love unconditionally."  i am just SICK about this.  i woke tim up from his nap (yep, here at 11 pm!) and asked him if he was aware of this.  he was not.   i just really cannot believe that in the year 2012 children who have special needs are not given the same rights and privileges that everyone else has.    this is not the last you will hear about this from me......  thinking......   what to do.....   who to talk to...... 

i neglected to include a link to this petition urging CHOP to allow amelia to have the kidney transplant that she needs!  please take the time to sign this petition now!  thanks andrea for this reminder!


  1. Absurd. I'm with you. I don't get it.

  2. Don't get me started... I read the article outloud to Roy, and just lost my mind! I couldn't believe the part where the Dr. said "I have been warned about you and how involved you are in Amelia's care" WTH!!!!! It is their child! I hope that God is forgiving me right now for the thoughts that I towards people that say such evil things. And I have another friend who has received this same news... Grr!!!!

  3. It really breaks my heart that others can not see the wonderful value of our children with Down Syndrome. I am right along side you fuming at the injustice.
    ~adopting Sydney and Lucien (two beautiful little ones blessed with down syndrome)

  4. This just makes me sick. I really had no idea until I read the same article as you. I just do not understand why our children are valued less. . . why they are unworthy of transplants. It makes no sense to me and seems to go against the ethics code. I am with you in that I am livid.

  5. I have a developmental disability. I am Autistic. And according to this hospital, I too would be ineligible for an organ transplant. Is the life of a person with a developmental disability a life not worth living?

  6. I, too have blogged on this--I provide links to an on-line petition, and to a page where someone (not me) has been collecting links to many of the blog posts on this issue.

    For some reason I cannot copy/paste the URL into this comment box, but if you click on my name it should take you there.