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 Guest
I am a nurse who has worked with several kids who have Spinal Muscular Atrophy. I currently work with an 18 year old who has been told by doctors all the time that she has no quality of life and that she is in pain and suffering. How does one determine quality of life is my question. MJ is 18, is a senior in high school in the honors program. She has been accepted to the honors/engineering college in Ohio for the fall. She has her own organization, makes/designs websites, talks to families daily, and never gives up. Those doctors need a reality check to see that MB can have a good quality of life if they stop playing God and let the family decide. Ultimately, it is up to the family and the child what they want. MB is telling the docs that he is fine and wants to live, that is why he is still there. My guess, he is upset by what they are doing to him and not letting him go home! Do the right thing!
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Replied on Tuesday, March 7, 2006 12:00 AM
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Guest
My daughter is going to be 4 years old in April. She has SMA type 1. She has an older brother (without SMA) and they have a great quality pf life. My daughter used a suction machine, bi-pap machine, cough assist, fed by a g-tube, has chest physio. She is very smart and happy. She can cry, but only does so when she is upset at an activity, wrong t.v. program. If she was in pain, I think she would be crying alot more. She has a preschool program. She does have a great quality of life.
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Replied on Tuesday, March 7, 2006 12:00 AM
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Guest
My daughter has Spinal Muscular Atrophy, and she loves life more than anyone I know. She is a bright almost four year old and goes to preschool. She can speak very well and says when she grows up she wants to be a doctor to check people's hearts. I think these doctor's hearts need to be checked. The only thing cruel in this case is having to go through life with a heart made of stone.
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Replied on Tuesday, March 7, 2006 12:00 AM
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Guest
My youngest daughter also has SMA Type I, and she is one of the happiest individuals I have ever seen. She is intelligent and funny. She has to deal with a lot of medical equipment, but she doesn't seem to mind. Baby MB's parents should have the final say in this decision.
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Replied on Tuesday, March 7, 2006 12:00 AM
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