Elayna's Army

Elayna was diagnosed with the auto immune disorder Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), at the end of summer in 2013 when she was 4.  What this does; her white blood cells attack her own body, damaging the nerves.  It has been attacking the nerves in her legs, making it difficult and at times, impossible for her to walk.  We first noticed her having problems going up and down the stairs, sometimes needing to crawl up the stairs instead of walking.  Then we noticed her tripping as she was walking.  Then she would just be standing still and her legs would give out on her and fall.  This got so bad that she wasn't able to put any weight on her legs.  She uses special braces for her legs and at times a walker to help her move about.  She has been going to the hospital every month for the last 8 months for differnt types of treatments.  Some of the treatments that we have tried in the past, either don't work, meaning helps her be able to use her legs a little bit, but after about a week, she starts declining again; or the treatments do help her be able to move around but give her really bad side effects.  One of the treatments that the Drs gave her, caused her to have aseptic meningitis, giving her nauseating headaches that would last for several hours, couple times a day, for a week straight.  We also have seen a specialist in St. Louis a couple of times about differnt treatments for Elayna.  She has bi-monthly physical therapy appointments, semi-monthly neurology appointments, and appointments with rehab Drs every several months.  This is similar to Guillain Barre, but considered a rare form of it since it is chronic.  The people who do get this, are usually older men; not 4 year old girls.  She, at the moment, is doing better, but since this condition is fairly unknown with her demographics; the Drs. are in the "wait and see" phase.  
(Update on Elayna)  Elayna has since graduated from physical therapy and just doing home exercises!  She was getting IVIG treatments while in the hospital, but still getting the aseptic meningitis.  She is currently getting pre-medicated before her IVIG treatments and then is getting high dose of Pred for 2 days after her treatment to prevent the Meningitis.  Insurance does help, however, they unfortunately are not paying for everything.  And with seven hospital admissions already in the books, and an unknown number of admissions still yet to happen; needless to say, the hospital bills keep piling on.

Donations

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  • Michele Dawbarn 
    • $25 
    • 83 mos
  • anonymous 
    • $500 (Offline)
    • 84 mos
  • Steve and Rita Lohr 
    • $500 (Offline)
    • 84 mos
  • Randy and Kim Terry 
    • $300 (Offline)
    • 84 mos
  • Benefit Sale 
    • $1,045 (Offline)
    • 84 mos
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Organizer

Warren Katz 
Organizer
Olathe, KS
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