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Thread: Mutilation of daughter as disability treatment

  1. #11
    The surgery to remove her uterus and appendix are unnecessary. She can be preventing from having children, and having periods in many other less invasive and reversible ways.

    The hormone treatment she is receiving is completely experimental. No one her age or even near her age has received such a high dosage of hormones. No one has any idea what effect it will have on her. This is the type of treatment that usually has to go through a very strigent approval process - and didn't. Why not?

    Melinda Gates is in charge of the hospital's fundraising program - the person in her position is an obvious target for this type of outreach. She has to answer to people who want to contribute to the hospital fundraising efforts.

    Just becausea person does something out of love and best intentions doesn't make it right.

  2. #12
    The parents and doctors chose to go pubic with what they did three years ago now. The doctors wrote an article and put it in a medical journal that was published in November and the parents created their blog - if they did not want the public to weigh in on what they did they should have stayed silent.

  3. #13
    And what are your intentions for this thread?

    If you don't want to give money to the hospital, don't.

    As for the meds being experimental, I'm thankful for people who've been first, who've made tough decisions, who've tried something new in hope for a better future. without those firsts, we wouldn't have any adbancements we have in medicine, in science. Most of us at CC would be dead.

    I understand why the parents made the decisions they have. They'd rather care for Ashley themselves, not place her in an institution.

    Just because you disagree with the medical decisions made in Ashley's care doesn't mean you're correct in pushing for a protest. I say leave those parents alone.

  4. #14
    Quote Originally Posted by PDnemesis
    The parents and doctors chose to go pubic with what they did three years ago now. The doctors wrote an article and put it in a medical journal that was published in November and the parents created their blog - if they did not want the public to weigh in on what they did they should have stayed silent.
    So weigh in. Just don't expect every person in the disabled world to jump onto your bandwagon.

    This is one gimp who thinks you should leave those parents, that child and the hospital involved, alone.

    I'll expend my efforts for a cure for paralysis.

  5. #15
    The Action Alert wasn't from me personally. This is a national effort of many many people in the disability community.

  6. #16
    "Parents don't own children"

    So... could you possibly mean that children are independent?
    So after birth a babe should go to work, get a spiffy apartment and carry on? The parents just says "Well, glad thats over with"?


    Why would people continue to have children at all? Oops. sorry, didnt mean to get pregnant.

    I personally dislike having to work, pay bills, take care of multiple issues and having to worry about things going on in the world. Will you then make the decision for me? Will you pay my bills? Live my life for me?

    Perhaps because I cannot walk, the decision to use a wheelchair is also wrong because a chair is not part of the natural order? Kinda like 'If we were meant to fly, we would have wings'?

    Sorry to go off like this, but a family has to make their own choices in life. The only way I think You could make those choices is if You personaly take over. Take care of a person day in, day out, then it's your choice.
    Either that or we become a socialist society and leave it up to the state.
    Don't know about you, but I want to be able to make my own choices.
    Rick Brauer or just call me - Mr B

    http://www.riseadventures.org

  7. #17
    Quote Originally Posted by PDnemesis
    The surgery to remove her uterus and appendix are unnecessary. She can be preventing from having children, and having periods in many other less invasive and reversible ways.

    The hormone treatment she is receiving is completely experimental. No one her age or even near her age has received such a high dosage of hormones. No one has any idea what effect it will have on her. This is the type of treatment that usually has to go through a very strigent approval process - and didn't. Why not?

    Melinda Gates is in charge of the hospital's fundraising program - the person in her position is an obvious target for this type of outreach. She has to answer to people who want to contribute to the hospital fundraising efforts.

    Just becausea person does something out of love and best intentions doesn't make it right.
    I guess you'd have to ask them why they didn't have to go through a stringent approval process. They're not marketing anything here so the FDA wouldn't be involved, I don't think. I think these things have to be approved by the hospital's ethics board, you have to find doctors willing to do them, and that is it.

    Who do you think should have been overseeing it? You're implying somebody shirked their duty but I can't tell who you are pointing a finger at.

    The blog says many kids with this condition don't survive past 5 or 6. Ashley is kind of a test case in that regard, the previous test cases just don't exist.

    I'm still not seeing Gates as an obvious target. I can't think of any other campaign that has ever used the name of the head of the fundraising program. I think that HER particular name is newsworthy and that is why it was mentioned. I'm not in charge of protecting Melinda Gates from mail but I do think it is odd. This issue has nothing to do with fundraising. Donors aren't really the same as stockholders.

  8. #18
    Senior Member wheeliecoach's Avatar
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    I personally do not support this either. I think that the parents did not make this decision without agonizing over it for a long time. They are doing what they feel is for the best interest of the child...plain and simple.

    This would be a different story if they wanted to terminate her life or neglect her needs...but nothing that is stated in the articles I read nor in what was posted here states this. The only thing I see is that her parents love her...and they want what is best for her. I support the parents here...and if I was going to do any calling or letter writing...it would be to lend my support to these parents and nothing else.
    "Unless someone like you cares a whole awful lot nothing's going to get better. It's not." - Dr. Seuss

  9. #19
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    I think they are choosing what is best for their daughter to take the best care of her later in life.

    If they didnt really care, they could have just shoved her in an institution and got on with their lives.

    I wish other parents cared as much as these do to make this agonizing decision.

    You are a crackpot for even riding this bandwagon!!! You have never walked in their shoes so you have no reason to judge them!!!! Just because you have a disabled child, you have not walked a mile in their shoes....every disability like SCI is different!!!!
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  10. #20
    Just because you have a child doesn't mean you are allowed to do with him/ her whatever you want. There were recently foster parents who kept their children with disabilities in cages. This was done upon the recommendation of professionals that were working with them to keep them safe while the foster parents slept. It was only when other professionals found out about it and intervened were these children put in other homes. The parents went to court and insisted that they loved their children, had consulted with professionals and were only doing what was best for them. What's the difference?

    Removing a healthy uterus to prevent pregnancy? Depo Provera shots have existed for several decades and are considered safe. ALL surgery presents risk. This surgery is experimental and no one knows what the outcome will be in a child this young.

    Removing a healthy appendix because of a 5% chance that something may go wrong with it someday and they have already cut her open and she is anethetized already? ? Why not remove her spleen too as long as you are in there cutting away. And why not remove her teeth since she doesn't chew and there are far more likely problems going to arise with her teeth than 5%.

    Giving a child adult hormones has unknown consequences. The doctors state they are monitoring her condition. So what happens if things go very wrong? - the damage will be done. Oen physician has suggested that these hormones may stop the child's bones from growing, but it may not stop her lungs, heart, kidneys, etc. to continue to grow to adult size. Her child-size body could run out of room for her adult organs. (This is exactly what is the cause of death for many people with specific forms of dwarfism.)

    There are very strict rules about using experimental medical procedures on children. The rules were not adhered to. The doctors circumvented established protocol that would have required permissions from a federal body that exists to decide whether such experimental procedures have enough merit to proceed.

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