Stand Up.

Edited to add(1/14): I've received several emails from people who are friends of CHOP, asserting that this is not the full story.  I agree that the process to determine candidacy for a transplant is probably quite complex, and I am hopeful that the IQ of this girl was not the sole cause for her denial.  However, if "mental retardation" played any part in her denial, then that is despicable.  I'm happy to do my small part to spread the story of another special needs parent who is begging to have her story spread.  But I'm not really interested in engaging in rounds of debate about it-because I simply don't know any more than what is here.  I'm not leading a crusade, I'm just sharing a story that a mom asked for people to share. 

A story popped onto my Facebook feed this morning, and my friend included a tag line about being angry that people judge the lives of people with disabilities as "less worthy" or "having a lower quality of life" than others. 

I didn't open the link.

Sometimes . . . well, sometimes I need to take breaks from all-things-disability. 

An hour later, it popped up again.  And then again.  Finally, I opened it. 

You need to hear this story. 

I think it's best if you go right to the source.

In case you're not in a link-clicking mood, here's the summary: A little girl (Edited: She's 2, nearly 3 years old. Younger than Maya. Her picture is on that link) has a genetic condition.  She will need a kidney transplant in the next 6-12 mos (this is expected, and her levels have been monitored for the past 3 years).  At her appointment at CHOP (Children's Hospital of Philadelphia, known for being an excellent children's hospital) on Tuesday, her parents were told that she will not be eligible for a transplant because she is mentally retarded.

She will not be eligible to get a kidney transplant, which is necessary to keep her alive, because she is mentally retarded.

The end.

When the family (in a rage) said Well, whatever, we'll just find a kidney in the family to donate to her the doctor responded with We will not do her surgery here.  She in ineligible because of her quality of life because of her mental delays.

If you are somewhat horrified and somewhat skeptical, thinking Come now, there must be more to it than that . . . no doctor gets to look at a little girl and say "Oh, you are delayed and you're life isn't worth living, so I will not give you a kidney and you will die" . . . well, you are wrong.  That's the story.

Are you ok with that?

Because you can be damn sure I'm not ok with that.

Stand up, people.  It's time to be counted.  If this were Maya, I know that you would help me rally the troops (and perhaps a firing squad) . . . so help Amelia's family.  I can't imagine the state of her parents.  Let them see their rage against such a gross misjustice spread and affect change.

 Take 45 seconds and do these 3 things. Please.

1. Go to this link and sign this petition, which demands that CHOP grant the transplant (and will hopefully cause a policy change at the hospital):

2. Write on CHOP's Facebook wall to express your disagreement/disgust/other adjectives.

3. Share the story.  Share Amelia's mom's link, or the link to this post, or the link to the petition.  Put it on Facebook, tweet it, email it to friends.


We cannot be ok with this.  And if you're not ok with this, you have to make your voice heard.

Blood draw? No big deal.

We had another genetic test done today, this time at the Children's Hospital at Montefiore.  It will take several weeks for it to be processed through CHOP (Children's Hospital of Philadelphia, kind of the mecca for genetics stuff)  and I'm not overly concerned with what the results are----however it comes back won't really change our daily lives anyway.

The best part of the visit was the blood draw (I know, what?  Drawing blood from a 2 year old was the best part?!).  .  Dave decided to video tape it, not knowing how it would go, and it turned out that she didn't cry.  At all.  No, really.  It was amazing. She whimpered, her face crumpled---I whispered to her and Dave distracted and that was it.  See for yourself (and enjoy the captions):

Disclaimer #1:  If you only see a white square below, with a play button, click on the play button and the video will appear.

Disclaimer #2: Dave thinks he sounds totally ridiculous---I think he sounds like a great dad who's trying to distract his 2 year old during a blood draw.  So don't mock the voice :)