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#11
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08-28-2024, 07:29 PM
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| My Rank: PRIVATE Poster Rank:6096 Join Date: Aug 2017 Posts: 38 Mentioned: 0 Post(s) Quoted: 3 Post(s)
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Re: Harlequin Ichthyosis
hate to say it, but please God, just let it die, decades of suffering for the baby, and decades of giving care to that child by the parents It's no friggin' life. a couple of these babies lived until young adulthood.  |
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#12
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09-08-2024, 12:48 PM
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| My Rank: PRIVATE Poster Rank:12584 Join Date: Aug 2024 Posts: 9 Mentioned: 0 Post(s) Quoted: 2 Post(s)
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Re: Harlequin Ichthyosis
If they make it, they live very difficult lives--the condition requires constant care and can be extremely painful. They look like they have a terrible sunburn and don't have hair.
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#14
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09-15-2024, 11:54 PM
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 My Rank: CORPORAL Poster Rank:1398 Join Date: Aug 2021 Posts: 422 Mentioned: 0 Post(s) Quoted: 60 Post(s)
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Re: Harlequin Ichthyosis
This is the developmentally disabled category. They will grow up in residences and be funded by SSI. They will be cared for by thousands of agency staff over the course of life until they die. Probably will be hand fed while in a wheelchair. Quality of life? Yes as per the agency CEOs making well over 300K annually in "nonprofit" organizations. In reality, there is no love from strangers. Fake outings in a van with their peers to a Costco parking lot will also be a reality while staff eat outdoor food in their presence.
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