Erin's Medical Fund

Many of you know a little bit of my sister Erin's story.  You've asked for updates and info and I've fumbled through words to try and explain Erin's conditions, surgeries, and upcoming appointments.  We are at a pivotal moment in Erin's health journey and am hoping a broad overview would be helpful for a greater understanding into Erin's world now.  (Note: this is BRIEF and not even close to a glimpse of all of Erin's history or symptoms)

Erin's Medical Overview: After wrestling with excruciating headaches, nausea, back pain and other symptoms since the age of 6, Erin was finally diagnosed in 2010 with a Chiari Malformation (brainstem disorder), hydrocephalus, dysautonomia, interstitial cystitis, and an underlying genetic vascular connective tissue disorder, which means all of her organs; arteries, brain, intestines, skin, heart, etc., are made with faulty collagen, elastin and protein. They are subject to not working properly, spontaneous rupture, tearing, and rapid deterioration. There is no cure for a connective tissue disorder. The best "treatment" is undergoing surgery to repair organs that have been damaged.  

She had her first brain surgery seven years ago and has since undergone over 39 surgeries which included placing a shunt in her brain to address the swelling (due to overproduction of cerebral spinal fluid), fusing her skull to tailbone with titanium rods, and removing her large intestine. Four years ago, both of her carotid arteries and her right vertebral dissected and occluded in the middle of the night and she had a stroke. Last year she developed Addison's disease due to the stress on her body from constant back pain that has not responded to any treatment or medication. 

Erin moved in with me and Nathan 4 years ago; having to leave Washington D.C. after her health prevented her from continuing to work. We were hoping ATL would have some new options to help her, but unfortunately most of her time here has been filled with disappointment, doctors unwilling to take on a medical anomaly, and lots of medical debt. On a daily basis she currently experiences constant nausea, uncontrollable back pain, headaches that vary in severity, extreme discomfort from eating or drinking, dizziness, and about 10 other symptoms. 

What's next? While certain surgeries have put out fires, Erin's quality of life is declining and the connective tissue disorder is progressing.  Most of the medications, supplements, and procedures have not been fruitful to date and there's been no treatment to address the underlying genetic condition.  Erin has already used her life savings paying for medical care and we are at a dead end as far as options, both medically and financially. Erin is losing hope and the repercussions of her constant pain are weighing on her.  

How can you help? Financially - This is definitely out of Erin's comfort zone, knowing I am asking for financial help for her, but I'm willing to do whatever it takes.  Erin has always done whatever it takes to care for others and I am honored to ask people for assistance in a hopeless time. If you have questions or want more detailed information, please don't hesitate to ask. Prayer - your prayers are coveted for Erin.  Please pray for her doctor to provide the correct course of action, procedures to ease her pain and for renewed hope for Erin!
  • Scott OLeary 
    • $200 
    • 19 mos
  • Scott OLeary 
    • $300 
    • 23 mos
  • Sue Pinkham 
    • $100 
    • 23 mos
  • Anonymous 
    • $100 
    • 23 mos
  • Josephine Au 
    • $50 
    • 23 mos
See all

Organizer and beneficiary

Erica Castleberry 
Cumming, GA
Erin MacInnes 
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