Morvan's Syndrome

By Christine, United States, December 9, 2014

My name is Christine & I am writing this in regards my to son, Justin. We reside in Lake Stevens, WA. On March 30, 2010, when Justin was just 22 years old, out of nowhere he started having weakness in his legs & was hospitalized at Providence Medical in Everett. Within a few days, Justin's weakness turned into full body paralysis. By April 26, 2010, Justin was transported to the ICU at UW Medical Center in Seattle, where he remained completely paralyzed to his eyes for almost 3 months. It was unknown what was medically happening to him. Justin was not living a "bad lifestyle", he was not involved in any kind of accident & he was not born with this. In fact, Justin had recently held a job at a well known retail chain for nearly 2 years. While Justin was considered mildly delayed & with anxieties, he was also considered highly functional. By May 10, 2010 Justin was officially diagnosed with Mysasthenia Gravis, (from Greek & Latin words meaning grave muscular weakness) a chronic autoimmune neuromuscular disorder & in the United States it's estimated to be about 20/100,000 each year. He also was diagnosed with Morvan's Syndrome, also an extremely rare autoimmune disease, it was discovered in 1890, & Justin is only the 15th US documented case in history. By July 30, 2010, still paralyzed from the neck down & with a trachea in his neck, Justin was released from UW to a skilled nursing facility, where he stayed for the next 8 months. Finally, March 1, 2011, we (my husband, Brett & I) petitioned the state to bring him home. Through all of this, as his mother, I had not left his side & even with much effort, eventually lost my 17+ year career as a Paralegal to be Justin's full time caregiver. Brett, a general contractor, was unable to work steady due to our sudden family distress & he desperately remained completely available for his family. We as a family have remained determined to "make it work", which has taken an extreme toll emotionally, physically, & most definitely financially. We own a two unit duplex & until all of this, we were housing for military families that got temporarily transferred & stationed locally. It just so happened our last military family moved October 2010. We struggled even more financially to keep that rental open & petition the state to Justin home (03-01-2011). Currently, almost 5 years later, Justin is now 27 & is at home (in the rental unit), but still requires daily assisted care, by us, his family. Justin had surgery on his feet this last July 24th, & we were back inpatient until August 17th. While we are still making progress walking again, Justin's syndromes/ conditions will stay in his body for the rest of his life & there's always the possibility it could "flare up" & set his recovery back again at anytime,(& did the day after his birthday 2011). Therefore, the state considers Justin as "totally disabled" for the rest of his life. This in a sense, has financially paralyzed our entire family. We thank you for taking the time to read our story. Additionally, please visit our blog to read our entire journey at:
<3 Much love from Team BCJ <3
(Brett, Christine, Justin)

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