ysobel: (me)
[personal profile] ysobel
Okay, so, uh. Most of you know that I have a condition called FOP -- Fibrodysplasia Ossificans Progressiva. For anyone who doesn't: it’s a really fucking rare medical condition where the body creates bone in and around muscles and tendons, progressively immobilizing the body into a human statue. It is incurable and untreatable.

This is a highly relevant video:



The 11-year-old in that video, Erin, got sick in April with basically the common cold, but it landed her in ICU. Between the severe scoliosis that FOP causes (I have way milder curvature because I was older when I started losing mobility, 10 instead of Erin’s 3, and my progression was slower) and the bone locking up her rib cage and taking up space in her chest, her airway is severely compromised. She was intubated as a last-resort measure for keeping her alive.

For the last two months, she’s been bouncing between ICU and “regular” hospital. About a week ago, her parents and doctors were discussing long term care options -- either BiPAP and hope like hell she never gets sick again, or a permanent tracheotomy. The trach procedure, complicated by the restrictions of FOP, would have her in the hospital until at least September and probably longer.

Four hours ago, she stopped breathing.

She has been successfully (re-)intubated, but... it’s bad and scary and so fucking not fair she’s a fucking *kid*, she isn't even 12 yet, she shouldn't be in the fucking *hospital* for *months*, let alone almost fucking *dying*.

(and if I’m being honest, this is fucking scaring me, not just on her behalf. My airway isn’t as bad, but this could be in my future too, and in another universe it could have been my path.)

So. Please, if you pray or send positive vibes or whatever, please send some to Erin and her family.

(She also loves postcards -- address is here -- but mainly I just want positive energy out in the universe for her.)
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masquerading as a man with a reason

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