Wednesday, October 28, 2015

It's a Slippery Slope

Until recently I have always been an avid news watcher but I swear now I just get sicken by many of the things I see.  This article was sent to me about a little girl with Spinal Muscular Atrophy.

So this little FIVE year old girl has been given the choice of whether or not she wants to go back to the hospital if she gets sick again or "go to heaven"  This story will lead you to believe that SMA is a disease that is painful, but it's not necessarily painful. It's awful.  It's similar to ALS.  Evidently the child gets to the point she may need a trach/vent to get oxygen and a g-tube to eat but even then, life is worth living.  Why do I know this?  I have a good friend who has a daughter with SMA.  Her daughter is a TEENAGER and she is living a full life.  She has a trach/vent and a g-tube now but she is still living life.  She tends to get pneumonia and lung infections, but that only slows her down till she goes in the hospital, gets some meds and gets better.  BTW in the video the little girl is in a vest that shakes her and loosens the mucus in her lungs, many kids use that kind of vest. 

I don't know the Snow family but I wonder what kind of doctors they have that would allow them not to get treatment for their daughter?  It makes me worried!

My friend's daughter Paige is a hot mess, she loves school, her friends and her family.  She has strong opinions and gets in trouble for talking too much:)   She dresses up for Halloween, goes to school, goes to school functions, she goes on vacation with her family and right now they are building a new home.  She is involved in LIFE! 

Ready to go out
At the new house work site

When she was little, the doctors said she wouldn't live past three years old.  Then they changed the I think they just stay quiet.   No she is not cured, yes the SMA has progressed.  Yes it totally sucks that she has to deal with it.  Now she has a trach, she's on a g-tube and she hated that but she is here....and she is enjoying LIFE!  I'm sure she wished her life was different, I wish it were too, but she's embraced the life she has.  Her parents have embraced her life.  They've been very proactive with her treatments and are on top of things. 

Every case is different, as each DNA is different. One writer on the comment section of the video seems to have more info than what the video shared but regardless I feel this is being shared to garner attention for the "right to die" movement. 

What worries me is not only did the family make the decision to allow the little five year old girl to say whether she wanted treatment anymore but that this is celebrated as something "good". 

We live in a "culture of death"  It's will affect all of us.  LIFE is not celebrated anymore. 

When I look at Selah, or my other two children who are disabled, I see them enjoying their life.  Yes there are hardships at times.  My father in law has been bed ridden for some time and some may see a person like him as not worth living, I don't I see his life as just as important as anyone else's.  

When I see articles like this, I am sad for the family.  I'm very sad for this child who has had to deal with more than most adults have ever had to deal with and who has a short life expectancy.   Life is not always fair or even. 

Unfortunately, this family felt they were safe to speak out on this and share with the world their decision.  They felt is was ok because of the world we live in now is more open to euthanasia than ever before.  This is celebrated as a "wonderful thing" that this child has the "right"  to decide not to get treatment anymore.....  it's a slippery slope.....

 Read about it here 


  1. I read a different article on this case and that article said she had Charcot-Marie-Tooth disease, not SMA. I did a search on Yahoo and there were several articles that came up....I looked at one from CNN and a different article but I can't remember who from but both had Charcot-Marie-Tooth disease. I've worked with a child who had the most severe form of SMA and she really enjoyed life too....but I've also worked with a child who had a form of muscular dystrophy and his life wasn't as fun because of how the parents handled the child's illness (SMA family embraced every day and was determined to give her EVERY chance of living life, the other's family saw him as a burden and if he was happy laying on the floor watching TV then great. I think these kids should have a say in their medical care....but at what age is that appropriate varies. The first article I read talked to two bioethics doctors, one who said mom and dad were wrong, and one who said they were right to let her decide. The one who said they were right pointed out the type of illness and some other factors can change the situations (he said a child with leukemia which is totally curable would be a case where he would not listen to their request). It is a slippery slope.....and it is one that I think many people wouldn't ever want to be on! I think a lot of it with children comes down to their will to live and how strong is that....and parental support does have a lot to do with that will developing. Sad situation all the way around...the family has my prayers as I know this is a hard thing for them!

  2. Actually the little girl in the story does not have SMA. She has Charcot Marie Tooth Disease.

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  4. I went & read about CMT & what I read said its not fatal but there can be nerve pain ....if it's not fatal what's going on?

  5. I've read more.... Now I'm reading she made this decision as a 4 year old!!! The parents have chosen NOT to give her a trach- which would take away the need for her to have a painful suction.... This is beyond wrong!!!!!!

  6. I am pretty sure I could not allow my 4 year old to make that decision.

  7. I was remiss in not reading MORE before I wrote this blog because I would have written it a lot more stronger. From what I'm reading the parents have chosen NOT to give her a trach which would alleviate the need for her to be suctioned through the nose, which seems to be the child's biggest complaint. I can't find any cases of this CMT being fatal, although one article did say there could be breathing issues. Having a trach is so not the end of the world. The child could be suctioned properly and have oxygen on in a much more comfortable way. I just can not believe this crap. I feel so bad for the child, to me this is child abuse!!!!!

  8. My best friend has a trach. I could not support him choosing to die... and he is an adult.

  9. I had read this article before and my thought upon reading it is that the child is being influenced by the parents. IMO, there is not a 4 year old child that would choose death (heaven) over being with her family. Maybe an older person would but at 4 years old, the child cannot understand enough to make that decision. The parents surely have influenced her. I don't believe in any circumstances that we have the right to choose our time of death. We and others can learn many lessons about our God by going through the trials with Him by our side. At the time, we may not understand but the testimonies of those trials, may draw us and others closer to God. Only God should chose when to take us home.