A Mother's Love

What Happened?
During my pregnancy with Grace I had to make a decision to take a medicine that would save her life while putting mine at risk. Without even thinking twice we decided that taking the medication and saving our little girl would be the only way!  Thankfully, the medicine worked and saved her life! Two years later I have the most beautiful little girl her heart is extremely healthy and has never missed a single beat. We’ve always said that angel’s wings are pumping her little heart right along. Unfortunately, my life is still at risk.28964232_15233304470_r.jpeg

Diagnosis:
I have been diagnosed with small fiber sensory polyneuropathy and postural orthostatic tachycardia syndrome. (POTS).  Small fiber is a wicked disease that wreaks havoc on my autonomic nervous system, killing and misfiring nerve endings throughout my entire body. This nerve pain moves throughout my entire body.  When it is in my neck making it difficult to turn my head and even swallow.  It has moved its way up and down my body making it impossible for me to stand or put pressure on my feet without terrible pain and passing out.  I have now lost my ability to walk and care for my own two children. I have gone from being a vibrant, working mother of two beautiful children to not being able to care for myself or my babies. I have become extremely weak and exhaust easily.  On my good days I am able to use a walker to go from my bed to the couch or bathroom.  On bad days I am hospitalized and have to use a bedside commode or am pushed in a wheelchair to get to necessary appointments.  During these bad days I am forced to live with excruciating nerve pain that runs from my neck and spinal cord down through my legs making it difficult for me to even turn my head without crying out in pain.  This small fiber causes terrible tremors that mimic seizures. These tremors can last a day or two making really difficult to get a drink of water or feed myself. Any slight movement causes excruciating pain. I have lost all form of independence and have to rely on the loving support of friends and family to care for not only me but for my children that I fought so hard to have.28964232_15233308730_r.jpeg

The worst part about all of this is the fact that I am no longer able to care for my babies I cannot play with them, bathe them, or take them for walks. I cannot cook, clean. I am no longer the partner, the love of my life Seth, deserves. I can no longer work and contribute to the bills. Bills that are stacking up far too quickly. Right now my insurance has refused to pay for over 50% of my necessary medication. Even the ones prescribed to help slow this terrible disease.  We are having to pay anywhere between two and three thousand dollars a month just to keep me functioning.

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What now:
 The only known way to help cure small fiber is to get IVIG treatments. It consists of Intervienious treatments for two hours a day five days a week. Unfortunately my insurance refuses to pay because small fiber is not well known, and they do not agree with the treatment plan that my TEAM of Neurologist have planned out.  Each IVIG treatment costs between $20 - $40 K. This is my chance at a normal life again. My chance to get out of bed.  To be the wife and mother that I used to be.28964232_15233310680_r.jpeg

Every day that I go without treatment, this disease takes another piece of my former life away. Right now as you are reading this, it is killing off more nerve endings and deforming more cells. I need this treatment as soon as possible. I want you, my family, and friends, to know that I love and care for you very much. I fully understand if you are unable to donate to my cause, but please share this post so that as many people as possible can see it. I need help now. My family needs me back.

THANK YOU SO VERY MUCH!  This money will go towards treatments and any medical expenses that are related to my diagnoses.

Donations

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  • Mickey Williford 
    • $20 
    • 14 mos
  • Mickey Williford 
    • $12 
    • 15 mos
  • Mickey Williford 
    • $15 
    • 16 mos
  • Mickey Williford 
    • $20 
    • 16 mos
  • Mickey Williford 
    • $20 
    • 16 mos
See all

Organizer and beneficiary

Lucy DuFore Turner 
Organizer
Tucson, AZ
Kristy Dupray 
Beneficiary
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