One of my biggest fears? That someday people will deem “Alexander” not worthy of medical treatment. That some day, some doctor will say, “No more seizure medicine.” “No more g-tube formula.” ” He’s never going to be a rocket scientist – so we will not help him.” Many of you are probably thinking these fears seem irrational.
It just happened. Not to Alexander, but to one of his closest pals, Mia.
Mia is beautiful. She is sweet. She is innocent. She is so loving. She could be Alexander. She has the same syndrome, the same diagnosis, and on paper – they both are classified as MR.
They both take slow steps. But, unless something is done – the doctors at CHOP (Children’s Hospital in Philadelphia) are 
not going to allow Mia to …. live.
Mia needs a kidney transplant. In 6 months to a year. Her parents aren’t even asking to be put on a list. They want to step up and donate one themselves. They don’t even want to take a kidney donated from anyone else…. And CHOP has just denied them. They say they will not do surgery for Mia because she is considered Mentally Retarded.
They will not give her a kidney. Donated by her parents. Because of her mental IQ. I am in complete shock.
Please help us. Please go and read Mia’s story HERE. Her mother writes it better than anyone else ever could. Please share. Tweet it. Facebook it. E-mail CHOP. E-mail everyone. Please. We know Mia. We love her. I’m asking as if it were Alexander…. because it could be. Please help her.
I am a former teacher, turned SAHM. I have 3 children. The twins, Andrew and Addison, turned 3 years old in October. I also have a 1 year old baby who was born with a very rare chromosomal disorder - Wolf Hirschhorn Syndrome. The good, the bad, the ugly.. all here. Because this blog keeps me from drinking.
Oh. My. Gosh. I can see why this is one of your worst fears coming true. This is SO sad. I can’t believe the hospital won’t help her. Her parents must be beside themselves…feeling so helpless and powerless.
This totally breaks my heart.
OMG. Going to read her story now and see what I can do. That’s beyond what any parent should ever have to hear.
wendy @ mama one to three recently posted..The History of Sleep
Oh heavens.
Is there something that can be done? I know she’s at CHOP, can she be transferred to another facility? I don’t know… Something, anything?
Not Supermom recently posted..Truth – This Has It!
I am so frustrated when I read this today. I am going to blog about it too. Will link to any blog posts that are written in support of beautiful Mia and her family.
I just don’t understand how this attitude still exists.
My thoughts and prayers are with the whole family and we will send our support from Australia.
Anna – hop on Twitter. I know Not SuperMom has linked up too. Xoxoxo
Will do! Just finishing the blog post now.
Anna@blogaboutabloke recently posted..Dear Braeden
I have. Willing to do anything I can to help. She doesn’t deserve this kind of treatment.
Not Supermom recently posted..Life for Mia
Have linked you in too Not Supermom.
Anna@blogaboutabloke recently posted..Words fail me
I have been off of my computer for most of the day. Just finding everything out. I am bawling my eyes out. Oh my heart hurts. I will spread the news. XO!
Kristen recently posted..The Coaching Bug Is Quite Contagious…
Absolutely heart breaking….
I was trying to post this reply on the WH Web post. Could you pass on the information? I kept getting an error trying to post it there. I’m glad they are getting support and prayers from all over.
I’m so sorry you are facing this. But I’m sure you know by now that you are not alone and many people will support you. Contact ARC and any other groups to get support — they will have legal resources and suggestions. I’ve already found some information that might help you.
I’ll put what I can in this comment.
http://www.cmaj.ca/content/173/10/S1.full
Quote: “Cognitive or neurodevelopmental delay is not an absolute contraindication to renal transplantation in children”
“Children with developmental delay and their caregivers may benefit from an improved quality of life associated with freedom from dialysis. The transplant procedure can be performed safely in children with developmental delay, and graft outcomes are similar to those in other children.38,39 Renal transplantation has also been associated with improvements in cognitive and psychomotor function.40 This may allow children with developmental delay to reach their maximum potential. Thus, children, who would otherwise be considered for RRT, should not be excluded from consideration for transplantation solely on the basis of diminished cognitive or physical capacity. ”
http://researchnews.osu.edu/archive/orgtrans.htm
Ohio State University researchers prove “Organ Transplants Just As Successful In Those With Mental Retardation”
Unfortunately, this is not unique, but there may be suggestions in here:
http://www.ispub.com/journal/the-internet-journal-of-health/volume-11-number-1/what-do-you-expect-she-is-mentally-retarded-on-meeting-the-health-challenges-of-individuals-with-intellectual-disability.html
http://www.ajkd.org/article/S0272-6386%2898%2900075-4/abstract
“We conclude that kidney transplantation in properly selected patients with mental retardation provides excellent patient and graft survival rates and improves quality of life. In such patients, the presence of mental retardation should not be considered a contraindication to kidney transplantation.”
This article from Italian researchers studied the topic:
Am J Transplant. 2010 Apr;10(4):727-30.
Transplantation and mental retardation: what is the meaning of a discrimination?
Panocchia N, Bossola M, Vivanti G.
If you Google it, you can download a pdf of the article.
There are probably many more — I’m sure you’ll get legal assistance, but there’s medical data to back you as well as the obvious ethical and moral considerations.
Best of luck for you and your daughter.
Thank you so much for all the information. I will make sure Mia’s parents get this info ASAP. Thank you.
If you want to keep up. Check out CHOP’s facebook fanpage. It is unbelievable how many people are responding. Also – there is a petition. Feel free to sign and pass it on. http://www.change.org/petitions/childrens-hospital-of-philadelphia-allow-the-kidney-transplant-amelia-needs-to-survive
You can also follow #lifeformia and #teamamelia on Twitter. Love that you love us. Thank you.
I’m so sorry your fear is coming true for your friend. I will read her mom’s version of the story. And, I will pray! And, I’ll try to spread the word!!
Caroline recently posted..Lost and Found
Everyone needs to bring this to the attention of their local News Media…Lets give this hospital and its content the attention that it deserves !!!! Totally outraged !!!
Please everyone, Let us bring this Hospital and its content to our local Media !!! Lets give them the attention that is so well deserved ! I am so outraged !
For sure I’ll tweet about this, sign petitions, whatever. This is horrible!
I am appalled anyone would ever think like this. This are “GODS” Children. You may think otherwise, but you will never know if it will happen to someone in your family or your child. Please we need to spread the word and not let this ever happen.
My heart goes out to you and sweet Amelia, children with disabilities have equal rights as children without. In my opinion our heavenly father blesses these special angels upon parents he knows will be able to give these children the quality care and unconditional love they so richly deserve. I agree with those above who advise bringing the Media as well as Dr. Phil even because I know if this gets national attention something will be done to save this precious baby girl. Sending best wishes for good health, luck, joy & love to Amelia and her family…keep us posted please and thank you for sharing your story. ~Hugs~ xoxo
Unbelievable! It could have happened in Ceausescu’s Romania in 1988 when my daughter was born with spina bifida, but it can’t be true in 2012 in Philadelphia! And even then and there doctors wanted to help against the “law”, and they did! This must be a one man show, I can’t believe it to be the hospital’s opinion.
I am so sorry this is happening to Mia. Your friend. Her mother’s baby. And to you. Know this – a huge chunk of the Autism parent community is with Mia, signing the petition, spreading the word. This could be any of our children and we know it. When we fight on behalf of one of the darlings we fight for all of them. I’m praying for Mia.
I have now joined those who have blogged about this and signed the petition at http://www.change.org/petitions/executive-vice-president-and-chief-development-officer-allow-the-kidney-transplant-amelia-rivera-needs-to-survive
Another blog that has picked up this story is a blog by an organization called “Not Dead Yet” that campaigns to educate medical personnel and the general public that, no, a disability never diminishes a person’s capacity to enjoy life and, YES, the lives of people with disabilities ARE worth living. It’s sad that some people actually need to be taught this, but “Not Dead Yet” is among the organizations working to combat the mis-conceptions around what the lives of real people with disabilities are actually like for those of us who live them (I am a person with multiple disabilities: deaf, attention deficit disorder, and a couple of other minor conditions). Check out their blog at http://notdeadyetnewscommentary.blogspot.com/
Andrea S. recently posted..Disability, the “Quality of Life,” and Amelia Rivera
Legally they cannot deny it if you have the resourses… but go straight to the media and the local news and email you heart out to other media sources, someone somewhere will look and say this is fucked.. if you have to even apply to have her flown to the Childrens Hospital in Melbourne Australia coz they take on cases that are neglected and restore order.
Please do not give up, if they say no look else where via media for help, a childs life has alot of value no matter the IQ, so they do deserve the love, kindness and respect, they might not know the words but they feel the emotion of what the no means…
and I will be sharing this on My Children Mean So Much To Me
During world war 2 the nazis would kill any human they deemed unacceptable. These were the elderly, mentally handicapped, and anyone who did not fit their mold of the perfect aryan. See about suing under the deliberate indifference laws of your state, if they can apply. The individual hospital will try to hide in its candidate qualification rules. Force them to give your child care if you have to.