Amelia

I had no idea what I wanted to blog about today.  Then, I read my friend Mandy's blog and was outraged.  This is sick, unfair, and unconscionable.  This 3 year old needs a kidney transplant because she has Wolf-Hirschhorn Syndrome.   So why all the outrage?  Her parents were told that little Amelia Rivera will not get the transplant she needs to survive.  A doctor at Children's Hospital of Philadelphia (CHOP) , for all intents and purposes, told Amelia's parents that Amelia doesn't deserve to have a kidney transplant.  Why?  Because she's "mentally retarded" and "brain damaged."  The medications she will have to take after the transplant could cause seizures and more brain damage so little Amelia doesn't qualify.  Other kids who get transplants have to take these same medications.  It's okay to risk them having seizures and brain damage but not little Amelia.   One social worker even had the audacity to smirk at the Riveras and ask them who would make sure Amelia took her medications in 27 years when they were dead.  Wow.  

Keep in mind that the Riveras were not asking that Amelia be placed on the transplant list.  They were going to go through family until they found a match.  They just need somebody to do the operation.  Little Amelia was denied.  This precious three year old girl was denied the right to live.  The Riveras were told to let Amelia die all because she's "mentally retarded."  

You can read about the horrible day that the Riveras were told that their precious daughter doesn't deserve to live here.

You can give Amelia a voice and demand that in 2012, she be given the same chance as a "normal" child by signed the petition.

Want to do more?  Go to CHOP's Facebook page and tell them that Amelia deserves to live.  Tweet about it using #teamamelia.  Let's make this TREND.  Google Amelia Rivera and read about this little girl.  


Who are these people to decide that Amelia doesn't deserve a life?  Please stand along with me and fight for little Amelia.


ETA:

Update:

Hello wolfhirschhorn.org followers:

Over the course of the last week, there have been new updates on the situation with Mia and the Rivera's status with CHOP. Over the weekend, a meeting took place between a number of the key leaders of CHOP, the Rivera's and wolfhirschhorn.org. The purpose of the meeting was to get an understanding of the chain of events that led to the "Brick Walls" posting. The meeting lasted a little over 90 minutes and the Rivera's had an opportunity to tell their side of the story and the related concerns about Mia's needs and how CHOP handled the situation. CHOP agreed that the system is broken and that they are taking steps to fix the process. In addition to addressing Mia and the next steps with her transplant discussions, a few suggestions were made to CHOP about their involvement in a more macro view of awareness around transplant rights for the disabled, and public and medical community education around the "mentally retarded" phrase. CHOP agreed to follow up and communicate their action items by the end of this week.

Mia and the Rivera's are planning a visit to CHOP in the near future to determine CHOP's role in her transplant and her on-going medical care. Once that meeting takes place, we will issue a statement on the status of Mia, her care, and CHOP's involvement moving forward.

To keep up to date on details of this story, LIKE us on Facebook (https://www.facebook.com/wolfhirschhornawareness) and follow us on Twitter (@wolf_hirschhorn).