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!
When she was little, the doctors said she wouldn't live past three years old. Then they changed the date....now 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 http://ghr.nlm.nih.gov/condition/spinal-muscular-atrophy