Friday, January 13, 2012


I settled down to relax for the evening next to my husband. The boys are in bed and we were going to watch the final episode of Extreme Makeover Home Edition. I got on my phone to check FaceBook on a commercial and was sickened and dumbfounded by a story I read about Amelia, a young girl who has Wolf-Hirschhorn Syndrome.

Amelia needs a life saving kidney transplant. She has a family donor. She was DENIED this operation because she has mental retardation.

Wait! What? Back up!!

Am I missing something? Is it not 2012??

Sadly, I am learning that this is not an unusual occurence in the world. If a patient's IQ is not high enough they can and routinely ARE denied transplants. HOW IS THIS LEGAL?

Just because a doctor does not understand the value of a child's life with a disability does not mean she doesn't have a HIGH QUALITY OF LIFE! Just because some arrogant jerk thinks her life is worth less because she is not as high on the IQ scale as another child he is willingly sentencing her to death.

The last I checked GOD is the only GOD. Just because you wear a white coat does not make you a GOD- not even close! This doctor who decided Amelia is not worthy is a MURDERER. He is WILLFULLY killing a beautiful child because HE is ignorant!

I am sick over this.

I sit here, thinking of my beautiful boys who are technically "retarded" based on a medical definition. I wonder what I would do if for some reason one of them needed a transplant to save their life and they were denied. I know what I would do. I would FIGHT. I would RISE UP and DEMAND better! I would take their story to every person I could think of and I would make sure that every media outlet, every politician, every parent and patient's rights group knew about their situation. Amelia may not be my daughter but as the mother of two children with disabilities this hits closer to home than I can express. I would rip the very heart from my chest and somehow give it to my child to ENSURE he would live. For Amelia- I will fight just as hard. I will fight and speak out for this sweet girl because SHE CAN'T speak for herself.

Who should be the one who determines who lives and who dies. Easy. God. Not a doctor. NOT a team of doctors. NOT SOME HOSPITAL.

Help save Amelia. Help her family. Help kids like Casey and Connor who may one day be in this same boat and will need THIS case as a precedent setter.

SPEAK OUT and RISE UP! Fight for Amelia. Fight for all the kids who can't do it themselves.

To read more about Amelia visit here:

To learn more about Wolf-Hirschhorn Syndrome visit here:

This is SAD. But more than sadness I feel anger- RAGE! This may be about a little girl I have never met. But next time it could be MY sons. It could be any one of the hundreds of children I have met in the Ds community. I WILL NOT allow myself to sit idly by while this happens.

Stand and fight with me. Children's Hospital of Philadelphia has a FaceBook page. If YOU are disgusted- write them there. Share your outrage!


Twilson9608 said...

Thank you for sharing her story. I hate this type of reality, it is so sad.

Anonymous said...

Thanks for sharing! This sickens me. I too am the parent of 2 special needs boys. Luckily for me and apparently them, they both have very high IQs, however, being that they have Asperger's Syndrome (and all of the associated diagnoses) and Tourette's Syndrome they have NO Social Skills. Makes me wonder if they would be denied these types of services because they have a "lesser quality of life"? Both of my boys are very happy, loved, loving, and caring individuals who are thankfully thriving. However, does the fact that they have a "less than normal social life" make them less? NO!!!! Social skills, "normal development", and IQ do not make any PERSON LESS than any other person. They have equal rights granted by ADA! They cannot deny treatment just because someone is different.
(rant over sorry)
Thanks again for sharing!!!!