Words fail me

This morning I woke to find a link on my Facebook page.
It sent me to this post here: Brickwalls It is written by another mother of a child with Wolf-Hirschhorn Syndrome.
It makes me angry and sad that in this day and age, we still have to face professionals who view kids with disabilities as not worthy of saving.
A life is a life.
Just because a person can't walk like you, or talk like you, or even eat like you, doesn't mean that they are any less of a person.
Not giving someone life saving surgery because you don't deem them worth it just makes me sick to my stomach. How can a medical professional sit there and 'play God' and refuse a little girl the chance at a longer life?
There are other bloggers too who have written about this.
You can read their blogs here:
Little Something For Me
Kisses For Kaylee
The Adventures of Not Supermom
A Kind Of Crazy
Ellie's Story
Uncommon Sense
Love That Max
(I will add to the links as I can)
Please share and support this family. Already there has been a worldwide public outcry.
You can go here to add your support: Sign the petition
Or jump on Twitter and Facebook and share. People need to be aware of this and need to speak up and say this is NOT GOOD ENOUGH.
Twitter is trending: #TeamAmelia  #lifeformia

Comments

  1. Kim ShaferJanuary 14, 2012 at 2:42 PM

    I to wrote about Mia on our blog http://akindofcrazy.blogspot.com our son Leo has WHS and we use CHOP. This just makes me sick. I pray Mia gets the transplant she needs when she needs it!

    ReplyDelete
    Replies
    1. AnnaJanuary 14, 2012 at 2:50 PM

      Hi Kim. Lovely to meet you. I will add your blog to the list. I am so appalled but Mia's treatment. I really hope that they reconsider the decision after seeing the outcry from the public.

      Delete
    2. AnonymousJanuary 25, 2012 at 11:08 AM

      Please, please, stop! The criticisms of CHOP, without knowing ANY of the details from the hospitals point of view, has got to stop. It's gotten to the point where, if Amelia does have her transplant performed at CHOP, that none of the physicians and nurses skilled at renal transplants want anything to do with the case. Sad, really....

      Delete
  2. AlisonJanuary 14, 2012 at 8:15 PM

    I haven't read the article yet but you can bet that I will be and I will be posting about it too.

    ReplyDelete
  3. Phil DzialoJanuary 14, 2012 at 11:55 PM

    Anna, I read this yesterday and was sickened. How could society have come to the point in medicine where people decide that some lives are not worth living...Profound moral outrage and the Drs. should lose licenses to practice because they are violating their oath ... to do no harm (which means to prevent harm). Unbelievable in 2012....

    ReplyDelete
    Replies
    1. AnnaJanuary 16, 2012 at 3:11 PM

      I read your blog post too Phil. Thanks for adding to the support that is out there! It truly is unbelievable that in 2012 this attitude still exists.

      Delete

Post a Comment

Agree? Disagree? Love to hear your thoughts! Thanks for stopping by!

Popular posts from this blog

Some things just never get easier

I have logged back in to write today as we come to the end of lockdown 3.0. I just saw in my unpublished posts my thoughts about lockdown 1.0. Hmmm. I might publish that one day!  Today's topic feels like something I have written about before. Over the past few weeks, Ryley has been undergoing assessments. These assessments are necessary in order for us to receive adequate funding under the NDIS.  Long story short, Ryley's last NDIS plan has failed to provide the funding he needs in order to participate fully in the things we had planned for his transition out of school.  The whole process has felt a bit messy.  It started with me not being listened to. This is despite my strong, knowledgeable-of-systems-and guidelines voice. No blaming or shaming here. It just is as it is.  However, for those that know me well, know that when you try and 'quieten' my voice, I will only speak louder. Especially when it comes to advocating and speaking for those that can't. ...
Keep reading

Blogging 101-how do I do this again?

Image
Sometimes I wander back into this blog and check out a few of my past posts. I read some of the wonderful blogs I used to follow regularly and contemplate writing here again.  So many things have changed in my life over the past few years.  The teenage years are...difficult.  I feel very alone in this raising a teenage boy with WHS thing. There is no one really to answer my questions, and I spend most of my days feeling as though my son hates me. I know he doesn't, but this is tough. Way tougher than I thought it would be.  So here I am.  Tracking my journey again. It may help others.  It may help me. But I feel as though there is so little support out there for parents who have teenagers with WHS...or any other disability for that matter.  I feel compelled to write. So, I will eventually update this blog so it looks a bit fancier and with the times again (ha!). But this is me. Raw. Unedited. Changed. ...
Keep reading

Is being strong, enough? Part 1

Image
      I am currently reading a book called 'Strong Mothers, Strong Sons', which is written by Meg Meeker. This is the beginning of my journey towards understanding what I could be doing better when it comes to supporting Ryley with the teenage years (this should benefit Braeden too!).Of course there is nothing in this book so far that relates to teenagers with complex disabilities ie. if they can't talk. However, I do feel as though there is some useful content. My plan is to start sharing my findings, and hopefully, start the process of developing some practical guides for parents of teens with a disability.       One thing I have been reminded of, is how easy it is for a mother to cause pain in her son's heart. While she (or I, such is the case), is busy focusing on how she is feeling about her son's behaviour , her son is slowly backing away because he doesn't feel as though she cares. I get this. It is so easy to make a young person's behaviour per...
Keep reading