|wyatt and big brother ethan....|
tonight i was reading an article on the wolfhirschhorn.org 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 AMERICA.....to 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 "
|big brother luke! you can tell eli is crazy about him!!!|
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!