Erin’s #Pseudotumor, IIH & Chiari Medical Expenses

In the early 2000's-February,  I officially met Erin. Later that same year she said "yes" and we were married in August 2006, ready to start our exciting, young lives together. We now have two beautiful daughters. Erin quickly put her many degrees to good use as a correspondent at a local, well -regarded newspaper & managed a local restaurant at night. I continued my job at a distribution company, gradually climbing the ladder. We bought a house, one in definite need of renovation, but a project we were looking forward to do together. Then, what seemed like out-of -nowhere, Erin became very sick & symptomatic - complaining of loss of vision, migraines, constant vomiting, weight loss, confusion, memory, speech, loss of control in her hands-feet-& equilibrium. That entire year she went undiagnosed. It was scary, risky, and painful to, say the least. In 2010 Erin is finally diagnosed. A very rare Intercranial (brain) disease/condition called Pseudotumor Cerebri , or Intracranial  hypertension. No cure. The treatment would be brain surgery to install a ventral peritoneal shunt. This would be her first of many. A shunt is placed in the cranium to drain excess spinal fluid from her brain & reroute the CSF (spinal fluid) into her abdomen. These brain surgeries are very risky with a high rate of failure. She has now had 6 - all brain surgeries - but different types-shunts, placements, & revisions. None of which were successful & many that caused a domino effect. Erin then had a severe infection (critical) in the ICU & there have been times where the Neurologists said the outlook was bleak. Spinal taps to remove CSF directly from the spine were continuous now. My Wife, summoning her own brand of unique fight, did what a good news writer does: she researched. Then she did the one thing that I knew My Bride would do: she took the fight into her own hands to survive this hideous thing - especially for our 2 girls, who were thrown into a 'new normal' - without their Mom & Dad - as we were away for weeks at-a-time. Months. Our Girls, although scared, become impressive young ladies. Maintaining a normal school day with family members & soldiering on through it all! Erin found a surgeon that performed Optic Sheath Fenestration. A surgery where the shunt is removed, the muscle to the eyes are cut & so are microscopic slats behind the eyeball that will drain the excess spinal fluid. She is living now with prism glasses that she needs to be able to see 24/7 & on medications that cost almost $1,000 out-of-pocket every month even with my health care plan from work. Our car is no longer in the shape to get her to her out-of-state specialists & we need a roof. The water leaks if left can cause serious health risks to her now nonexistent immune system. These financial issues, along with medical bills, are just some of why we are here. Erin has become an advocate for an online forum, helping others through the steps of #PTC/#IIH & #ChiariMalformation. Something She feels gives her purpose. I am so proud of her strength & so incredibly lucky for everyday we have to fight & survive together! This will be our lifetime fight & together we will shed light on this largely unknown brain condition. Lastly, I want to extend my Thanks to all of you for choosing to read Erin's Story. I realize that your time is precious & I appreciate that you've spent it here. For all of you that can help in any way whether that be through fundraising or by sharing- know that we are forever humbled.