Well… we went viral yesterday. It was an unbelievable experience. I wrote THIS POST about our friend Mia. I wrote it because Mia’s mom, Chrissy, shared her story. After a devastating visit to CHOP (Children’s Hospital in Philadelphia) earlier this week, she wrote about it HERE. (Her words are better than anything I could ever say.)
I spoke to Chrissy this morning. We discussed many things, and it is with her blessing that I write the post of my heart.
1. There have been several people who have asked “What is MIA able to do?” “What is her quality of life right now? For people removed from the special needs community, this might seem like a reasonable question. But, anyone who knows anyone with a disability will tell you – that question doesn’t matter. It really doesn’t. My son – whom many of you read about on a regular basis – is 20 months old. His peers walk, talk, eat… I know, we have a nephew a month younger than Alexander. Alexander does none of these things.
Does that make him less of a person? Does that mean he will never? Does that mean he should be denied medical treatment?
Many children with Wolfhirschhorn Syndrome have significant delays. G-tubes are a regular sight at our gatherings. I personally, have a love hate relationship with the G-tube. I hate that Alexander has it, but know it has saved his life many times. However, he is learning to eat. He is learning to be “vocal.” He is bearing weight on his legs. I know a lot of children with WHS that walk, talk, and eat. Often our syndrome is associated with Down Syndrome because some of the “classic issues” are similar. Some children have more delays and some have less.
Here is the thing. It shouldn’t matter What any child is able to do at this point. It just doesn’t matter. Alexander is my child, I love him, and I take care of his needs. Mia is the same. It doesn’t matter what she can or cannot do – so that is why I’m not even addressing what Mia “can” do. Because it just doesn’t make a difference All children deserve the right to life.
What if it was your child. It could be. Count yourself lucky if you have never had to fight for your child’s right to live. I have… and it stinks.
2. There has been a lot of speculation weather or not this story is real. I am the most skeptical person around. If I read this on the internet, I would probably question it also. Except – I know it is true. Mia is a real child. Her parents are real. Her siblings are real. I know them. I’ve heard her mom’s tears. They are not people who would “make a story up.” And… if you read through the comments on CHOP’s Facebook page – I have seen other parents already reply they have been told similar things by doctors. I have been told similar things. Before Alexander was released from the NICU, my husband and I asked the doctors (At Pinnacle Health in Harrisburg) what to do if Alexander had a seizure or other medical issue. A well meaning doctor held my hand, looked me in the eyes, and said, “let him pass in peace.” I also posted in February about visiting a GI doctor who refused to help us put weight on Alexander because, “I could help you, but then you will just have a FAT baby to lug around until he dies.”
Two years ago, if you searched Wolfhirschhorn Syndrome on Google, you found these awful stories. Terrible accounts of people with disabilities from case studies done in the dark ages. One of the reasons WolfHirschhorn.org was founded was to tell the real story. The stories of children who walk, talk, play, love, yell (as Alexander is doing now), and … did I mention love? The real story is getting out, but not fast enough. Mia is the ultimate example of people who place value on life based on your contribution to the world. So if you don’t become a rocket scientist, you don’t have value?
If you want to learn more about Mia… to better understand HER… you can find old stories and videos they have posted. Here are some links you can browse if you are still skeptical.
Video of Accepting Mia as she is
If you go to Wolfhirschhorn.org (our stories) on the left: Amelia = 16 posts about her.
3. Lastly, no one expected this story to blow up the way it has. Chrissy is in complete shock. One of the biggest questions asked is, “what can we do to help?” You can post on CHOP’s Facebook page. HERE. You can e-mail anyone you know who has any connections to ANY ONE. You can share this story through social media outlets like twitter and Facebook. You can “link in” to this story. You can Share it with your friends. You can sign the petition for Mia found HERE. You can follow #TeamAmelia and #Lifeformia on twitter. And tag any posts you write about her story. You can read other blogs.
If you have written a blog or article about Mia’s story, please leave a link in the comments section so others can find it.
If you have found an article or blog about Mia’s story, please leave a link in the comments section so others can find it.
If you have suggestions on how to spread the word, please comment… we really don’t know what we are doing!
Our biggest fear is that CHOP will attempt to “wait out” the long weekend in hopes that things die down and people forget. Please don’t let them forget. Continue to spread the word.
Remember… this could be any child. This could be your child.
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.
XOXO to you both. Doing what I can to help.
Not Supermom recently posted..Life for Mia
Oh my Lord.
I’m beside myself. A friend posted your link to this post..and I fell out of my chair at your “I could help you, but then you will just have a FAT baby to lug around until he dies.” comment.
You’re right. I really am beyond blessed with the healthy 3 1/2 year old I have. And I can tell you one thing-after the talk about all this in the past 24 hours…I’m pondering hard how I’ve missed that this stuff actually really happens.
Prayers to you and your adorable family.
Joey Fortman
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My prayers to Mia and Chrissy. Such a sad story.
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This story is just heartbreaking. I was really angry when I read the parents account of what the doctors told them yesterday, it was shocking to say the least. Might they consider finding a religious hospital for the organ transplant? There at least there would be no question of the sanctity of that precious girls life.
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Oh Jen, this thing has taken on a life of its own. I know they will not stop until Mia gets a transplant. But – I think people really are appalled that these ideas still exist in 2012. So, after that precious girl receives the treatment she needs… maybe the next question should be – How do we stop this from happening to other people?
A friend of mine works on ableism/disableism and she was sending me studies last night. Apparently this happens far more often than we can possibly imagine. So.very.sad.
How do we stop this from happening, indeed.
Not Supermom recently posted..Life for Mia
please keep updating us on what happens here. xo
wendy @ mama one to three recently posted..The History of Sleep
As a mother of two boys on the severe end of the autism spectrum I could not be quiet when I read Amelia’s story. I had to do something and it had to be BIG.
Right now we are nearing 5,000 signatures on her change.org petition but we need so many more!
Please, share the petition and Amelia’s story with everyone you know. Put it on your Facebook wall, tweet it, and email friends and family.
http://www.change.org/petitions/childrens-hospital-of-philadelphia-allow-the-kidney-transplant-amelia-needs-to-survive
Sunday Stilwell recently posted..Interior Decorating: The Autism Edition
I am beyond sick about this. (wrote a post about it with the same name: http://whosays8isenough.org/2012/01/13/i-am-beyond-sickened-by-this/ )
I am a mother to a severely autistic son and also a PA resident. My son has been treated by CHOP’s autism clinics and I just can’t believe their hypocrisy.
My blog friend Sunday (of Adventures in Extreme Parenting) started a petition for Amelia:
http://www.change.org/petitions/childrens-hospital-of-philadelphia-allow-the-kidney-transplant-amelia-needs-to-survive
I sent an email to the adminstrators of Wolfhirschhorn.org. Would LOVE for Mia’s parents to contact me as I have a lot of friends who have contacts with Philly media outlets.
I also reached out to Senator Rick Santorum, as he represents PA, and also happens to be a parent to a severely disabled child and supports Right to Life. Hoping he can give this a National face.
SO sorry for what this family is going through, but hope they are feeling the love from all around the blogosphere.
Great work for getting the word out. I just read this for the first time and I am also sickened. To deny a child a transplant. I would consider transferring to a Christian based hospital. Obama care does not care!
I think I just left a comment, but not sure why it didn’t post…
Just wanted to say I am doing what I can to get the word out and would love to do more.
(I happen to have a lot of contacts within the Philly Media world and would love it if you’d pass my email along to Amelia’s family. Would love to get this some national attention.)
I wrote a post to help spread the word, but would love to do more.
http://whosays8isenough.org/2012/01/13/i-am-beyond-sickened-by-this/
As a mom of a disabled child, I am appalled.
debi9kids recently posted..I am BEYOND sickened by this.
My blog entry, while not completely about Amelia, it touches on the issue along with others.
http://contactlens21.blogspot.com/
Parents of special angels are all one big family. We will not forget this. We will not let it fall away.
While I’m disgusted that this is happening, I’m thrilled that it’s gone viral for Amelia’s family, and anyone who has ever, or ever will, have to deal with something like this. I wrote a brief post at http://www.backwoodshousewife.com/2012/01/hope-lives-here.html, to which I will add your update. Thank you for sharing.
Annie recently posted..Hope Lives Here
I’ve blogged about this story at http://specialchildren.about.com/b/2012/01/13/hospital-denies-kidney-transplant-because-of-girls-intellectual-disability.htm, and have added links to your posts to a running list there.
Thanks for the update. Glad this story has gone viral and is bringing attention to not only Amelia’s story but WHS also. It really does come down to basic human rights. No one has the right to play God.
Kristin @ What She Said recently posted..Babyonce and the Mayan Calendar: Coincidence?
Between playing god and taking care to your child there is a lot of difference, I can say that after I volunteer with kids that has Down symptom, I can honestly say that god created everyone for a reason, and yes, we should not force a change.
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Doing my part to not let this fight die!
http://kojozo.blogspot.com/2012/01/angry-disgusted-does-not-begin-to.html
@MrsZ10 on twitter
God bless Mia n her family
This story is horrifying. I wrote on CHOP’s facebook page and will post about it on my facebook page. Been thinking of this story ever since I read about it yesterday. I know life isn’t fair, but this is an unfair story that can be fixed. I hope CHOP does the right thing – and if not, that another hospital will.
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The only thing I can advise anybody to do in this situation is to try another children’s hospital. My, now almost 9 month old son, had a heart transplant on October 2nd at Arkansas Children’s Hospital after being born with multiple congenital heart defects. He went thru 2 open heart surgeries, 3 cardiac arrests, 2 stays on ECMO (life support). ACH doesn’t give up on anybody! Awesome hospital! Also you guys should set up a facebook page for her. My Wyatt has one called A New Heart For Wyatt. God bless and we will be praying! <3
MY son Tyler was treated at CHOP for moyamoya…..he suffered strokes due to this illness…..he had major brain surger at Boston Childrens to help prevent future strokes……by 18 months old his liver was failing….CHOP refused to to a liver transplant even though my husband and I were both potential donor matches…..they told me it was also becuase he did not have a good quality of life….Tyler was eating by mouth, he can see hear and shows many smiles and laughs……….they waited so long to tell us NO and kept dancing around the bush…he suffered 2 TIA’s ….they also told me I would probably not find another hospital in the country to do the transplant…..they also told me to sign a DNR and did not want me to allow any more transfussions….that I should leave him go…Many people would not believe this but it is true………I was determined not to give up on my baby who was fighting so hard to be w me……AI Dupont in Wilminton DE took his case as soon as I contacted them….He was transplant with his father being the donor…..yes he has medical problems but he is still with me today 3 years later
That is a wonderful story! So thrilled for your son and happy you shared. I think there are a lot of people who don’t realize this happens All. The. Time. Thank you for sharing your story.
Outraged. Appalled. Sickened.
I have re-posted on my FB page and left a comment on the CHOP’s page–just doesn’t seem like enough, though, to really match how upset this whole story makes me
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I posted this story on Facebook, I posted on CHOP’s facebook page, I sent it out via my regular Twitter account, and I sent it to Patricia Heaton (from The MIddle and Everybody Loves Raymond) who retweeted it to all 57,000 of her followers within 10 minutes. Three of my friends on Facebook copied the story from my page and reposted it on their pages, including a musician in the Pittsburgh area with a large following. I will do everything in my power to make sure that the pressure on the hospital only grows until they admit they were wrong and agree to change their practices.
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i reposted this on my twitter and facebook pages and hopefully my friends will repost it too, don’t give up, fight to the end.
I have written several posts about this story on my blog and have received an incredible increase in traffic due to it.
Elizabeth Aquino recently posted..Love Letter
I’m glad you wrote posts about Mia. I’m going to link those posts here to make sure people are reading her story: http://elizabethaquino.blogspot.com/2012/01/lets-talk.html and http://elizabethaquino.blogspot.com/2012/01/lets-talk-some-more-part-2.html.
Your increase in traffic is good for your blog, but changing a life is an amazing feeling. Thank you for helping their family.
As a Mom of 5, my heart is THUMPING in my chest! I am ….appalled doesn’t even come CLOSE! Saddened, sickened & outraged is not even the beginning. I pray that your rally cry is heard, and that family’s everywhere will aid in this fight for life. <3
Life is life, the alleged quality of a child’s life in this case is immaterial. The child has a wonderful quality of life with parents who love her and are prepared to do anything for her. That doctor should be struck off. He certainly should not be around children.
What that man is saying, is that he, and that hospital, are going to allow Mia, a living, breathing human being, to suffer and die. That is almost beyond any comprehension.
Life is always the right choice. Disgusting…
Sj recently posted..Who’s Afraid of Social Media?
I’m outraged by all this. Not as a parent of a child with special needs (I’m not) but as a Christian. It’s disturbing. Who are they going to deem ‘not qualified to live’ next?
Heather recently posted..Speaking out for Amelia…
Hi I do not know where you live, but am shocked when I found through face book, if you have time and travel expenses please contact through link that I give to avail of best treatments in wold which is being given in Sri Sathya Sai super specialty hospitals in India- free treatment and service for all irrespective of any condition
http://wfd.sssihms.org.in/index.asp
Do feel free to contact them. you can belong to any religion or anything, nothing matters except love in bold.
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http://merlinsbaggy-y-fronts.tumblr.com/post/15885520446/http-www-wolfhirschhorn-org-2012-01-amelia-brick
Here is my blog post for Amelia, her family and my VERY open thoughts on the entire situation…
http://l00kingglassblog.blogspot.com/2012/01/dying-girl-denied-transplant-based.html
Missy (@m0m23kidznKatz) recently posted..Dying Girl Denied A Transplant Based Completely On Mental Disability
Who is running for a Political appointment in this area? I live in Northern Jersey – EVERYONE involved in this should inundate the Governor\ Senator\Assemblymen and whomever else they can with e-mails and phone calls. This hospital receives PUBLIC money – threaten it – get an Attorney and sue them for discrimination! I am sooooo appalled and disgusted by this. MEDIA SOMEONE CONTACT THE NEW YORK, PHILADELPHIA MEDIA – GET WORD OUT TO EVERYONE. If they can be so callous as to say these things in a closed room then they should be able to say it PUBLICLY.
wrote about it on our blog- http://akindofcrazy.blogspot.com this scares me to death as we use CHOP for all of Leo’s care! Please keep us all updated with what is happening. I am surprised the media hasn’t picked it up yet. I keep checking for an update on the WHS page. The site must be getting swamped!
Kim recently posted..Is the quality of my son’s life less?
Kristen,
Continuing to pray. Blessed to have written a post that hopefully is insightful and will help spread Mia’s story.
http://imperfect-antoline.blogspot.com/2012/01/for-mia.html
Love you, girl.
Awn
Awn recently posted..For Mia
Just wanted to let you know that I posted again about this.
http://whosays8isenough.org/2012/01/15/sunday-snip-it-hell-hath-no-fury/
debi9kids recently posted..Sunday Snip-It ~ Hell Hath No Fury
I was reading this when my 7 y/o daughter saw Mia’s picture and asked why she looked different. I explained that she had a serious condition that made it hard for her to do normal things; that she was developmentally delayed and that she might never walk, talk or be able to live a “normal” life. She was nearly brought to tears, but then I explained that she is really good, however, at loving others and being loved. Quality of life should only matter if she’s suffering in some terrible way… not if she will ever achieve arbitrary milestones. Those pictures are not of a miserable being. Those pictures are proof of someone who has light in her eyes and exudes love. That she will live her own life, defined by her own achievements, shouldn’t have anything to do with her worthiness to live. This is no better than the Eugenics movement of the 1950s. Its disgusting. Good luck to you all – and especially to Mia!
The sad and frustrating thing is that so many people just assume that having a disability is somehow supposed to automatically mean you are living a tragic life of suffering. I’m not a parent (which I mention because I think most of the people reading here are), but I am MYSELF a person LIVING WITH MULTIPLE DISABILITIES. I am deaf, I have attention deficit disorder, and I have a couple of other minor conditions. And yes sometimes it can be hard. But I’ll tell you two things. First, 98 percent of the time it’s not MY disabilities that make my life hard, it is OTHER PEOPLE’S ATTITUDES TOWARD MY DISABILITIES and the accommodations I need because of them that create so many completely unnecessary difficulties for me. Second, you know what? I still have a great life with a job I value very much because I’m working to coordinate a project that has the potential to influence lives literally around the world, and a partner who I love (and who loves me), and so forth. And even if I didn’t have a job, yes I would still say life is worth living.
I know another woman with multiple disabilities including autism and various cognitive processing disorders–she can write very well during the occasions that she is able to translate her thoughts into language (her natural mode of thought is without language so it can take her time to figure out how to wrap words around the many complex ideas she has) but still has various issues that affect her ability to learn certain kinds of skills and then go on remembering how to use them across varying contexts. She has written about the quality of life issue here: Up in the Mountains and Down in the Valley Below: My Richness and Yours
I also encourage people here to read Amanda Bagg’s entire blog, including her various videos (“Being an Unperson” has been used in training programs for staff who work with people with autism or intellectual disabilities). The blog is at http://ballastexistenz.wordpress.com
Andrea S. recently posted..Disability, the “Quality of Life,” and Amelia Rivera
Whats wrong with pepole no one has the right to play god I’m a bolteer fireman I don’t get to pick and choose who I have to save I took the oath to serve and protect thought doctors where suppose to help not be the desicion maker on who they treat it doesn’t mater what disability any one has every one deserves to live take from someone who lost there brother in a car crash he went peacefully instantly but this little girl could have a chance she shouldnt be turned away because of a disability the doctors get paid plenty
My heart and prayers go out to all of you. You are truly God’s children.
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My prayers are with you. May the Lord be with you always.
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these story is heartbreaking..Hope I can help all these person..for now my prayer is all for you..
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I know that everything will be fine, Xoxo and I pray for all the goodness…
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