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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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ME/CFS youngster taken away from parents by government

Discussion in 'Action Alerts and Advocacy' started by Cort, Jun 26, 2009.

  1. fresh_eyes

    fresh_eyes happy to be here

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    mountains of north carolina
  2. Koan

    Koan Be the change.

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    I don't read the Lifestyle section very much and might have missed this thread. I agree that it should be moved into Advocacy or some other, more active, thread.

    We need to know what we're up against.
  3. Robin

    Robin Guest

    I'll (try) to move it. Kim and Cort are sooo busy. If I fail, well, then we all know who to blame. :p

    EDIT: Ok, I think I succeeded!
  4. fresh_eyes

    fresh_eyes happy to be here

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    Thank you, Robin! :Retro smile:
  5. starryeyes

    starryeyes Senior Member

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    This story is so tragic. Why isn't the CAA doing something about this?
  6. Koan

    Koan Be the change.

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    Good move, Robin! Many thanks.
  7. jspotila

    jspotila Senior Member

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    The Board considered getting involved in the Ryan Baldwin case back in April 2009. The Board affirmed the following policy, and response to the request to participate in Baldwin's case:

  8. starryeyes

    starryeyes Senior Member

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    I appreciate you answering this Jspotila. Thank you.

    I have to wonder, if it was your kid or their kid (someone from the CAA) would you all feel the same way about the only prominent CFS patient group in the U.S.A. not taking a stand in such a case? I think I'd feel very let down and unsupported.

    This is happening right in our own country, not in the UK. Therefore, if not the CAA, then who?
  9. jspotila

    jspotila Senior Member

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    If it was my best friend's child who was involved in this, I would want anyone and everyone to help. Unfortunately, the Association does not have the resources to do everything that needs to be done. It's impossible. And the Board has the legal and ethical obligation to set the priorities for allocating resources, and safeguarding the Association's ability to continue its work. Involvement in individual medical or legal cases is beyond our capacity. If it were my best friend's child, I would be disappointed by that. But I hope that I would also understand why the policy exists and that it is applied equally to all cases.
  10. starryeyes

    starryeyes Senior Member

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    I think this is the kind of issue the CAA should involve itself in. If nothing else they could at least set up a page that explains what's happening to the Baldwins as it happens and set up a template for people to write their govt. leaders about it.

    The Baldwins aren't the only family this is happening to in the U.S. They're the most well-known though and their situation should be a rallying call to all who care about how people with CFS are mistreated in this country and to the plight of all children who are being ripped out of their homes because either they're ill with CFS or their parents are.
  11. johnnylove

    johnnylove Guest

    I'm so sorry for you. I've gone through a similar situation. No one ever said they were sorry despite my daughter being free from any kind of abuse. I suffer to this day over that.
  12. lbald33

    lbald33 Guest

  13. starryeyes

    starryeyes Senior Member

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    Thank you for this link Ibald and Welcome to the forum! :balloons:
  14. Hope123

    Hope123 Senior Member

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    That's great that the Mountain Express wrote this up. I remembered hearing about this case a few months ago and sent in a card for the boy. It's horibble what he and his family endured but this is exactly the type of press CFS needs; children in distress attract attention unfortunately.

    It was also quite timely that at the 10/2009 CFSAC meeting, Dr. David Bell gave his talk about CFIDS and Munchausen's and the difference between the two. I think he was trying to get people to understand the issues on a federal level.
  15. muffin

    muffin Senior Member

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    USA!
    Ryan Baldwin - U.S. Child with CFIDS returned to parents (Taken by DSS)

    Ryan Baldwin has been returned to his parents in Asheville, North Carolina. Ryan was removed from his loving and supportive parents by Buncombe County Department of Social Services and placed into foster homes several hours away from his parents. This is a horrible story that should never have happened but did. Ryan's parents and grandparents have taken Ryan all over the US seeking medical care for Ryan - he has CFIDS and other disorders. But that did not stop BUNCOMBE COUNTY DEPARTMENT OF SOCIAL SERVICES from deciding that Ryan was in "danger" from an essentially, "over-protective mother". Links are below and the article is also below. This is what happens in the US to children with CFIDS.

    See the Baldwin's website for more information: http://www.bringingryanhome.com

    http://www.mountainx.com/news/2010/022410home_for_good/

    Home for good? Black Mountain couple regains custody of son

    by Nelda Holder in Vol. 16 / Iss. 31 on 02/24/2010 .

    ---------------------------------------------
    Click here http://www.mountainx.com/xpressfiles/dss_case_involving_ryan_baldwin to go to Xpress Files and read an interview with Angela Pittman of the Buncombe County Department of Social Services.The interview was given with the express stipulation that individual DSS cases could not be discussed.

    [Freelance reporter Nelda Holder can be reached at nfholder@gmail.com.] - NOTE: Ms. Holder did an outstanding job during the entire time Ryan and his parents and grandparents were battling the Buncombe County DSS system.
  16. Advocate

    Advocate Senior Member

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    Muffin, thank you for posting this story of mistreatment of a family by government agencies. It's a story that touches parents everywhere.
  17. Advocate

    Advocate Senior Member

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    Hi Hoping,

    I am so sorry that you and your daughter had to go through this. It makes me want to scream.

    You know, the National CFIDS Foundation was good about publicizing cases like this. As far as I know, the CAA has never been any help. (Correct me if I'm wrong; I'd love to hear that I am wrong.)
  18. Carrigon

    Carrigon Senior Member

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    Do we have any statistics on how many children there are with CFIDS/ME? It seems to me there should be a special world wide organization setup to help them, even if it's just to lend support and educational materials about the illness. And certainly to stop government agencies from coming in and taking these kids and doing a thousand times more harm.

    I can't even imagine being a healthy parent of a child who has CFIDS/ME and being terrified that someone would take my sick child away, not give them the care they need, and make them worse. That's horrific, like we're living in the Witch Hunt times.
  19. muffin

    muffin Senior Member

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    They all tried to make Lisa Baldwin look like an overprotective mother and difficult woman. She is neither. Lisa Baldwin is a mother bear protecting her cub. She is NOT difficult but of course that is such an easy tag to hit a smart woman with and they did. Lisa Baldwin did everything right for her child. I have enormous respect for Lisa and all that she did to get her child back and ensure that Ryan had the very best of medical care regardless of where they had to go and how much it cost. Ryan is a lucky young man to have a mother like Lisa.

    Lisa Baldwin is an amazing woman and gets my vote for "Mother of the Decade".
  20. V99

    V99 *****

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    I agree Muffin.

    There is nothing overprotective about trying to stop quacks using inappropriate psychological treatments for a physical disease. The is nothing overprotective in stopping the authorities from taking your child away.

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