I've known Steve for 15 years. He's come through for me and others when needed, even when not asked.
Now it's our turn to help him and his family.
A few years ago, Steve was diagnosed with Stiff Person Syndrome (SPS), which is an extremely rare disorder. It is characterized by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to noise, touch, and other stimuli and can set off muscle spasms strong enough to break femurs and crush ribcages. SPS strikes 1 in a 1,000,000. SPS is a terminal disease, there is very little treatment and no known cure. Expectations with this diagnosis is completely bedridden within 2 years and a life expectancy of 5 years. His only hope of beating this is to have a stem cell transplant.
Because this is a clinical study, their insurance company considers this an experimental procedure and as such is not covered under their policy. After several months of fighting and appeals, he was informed that the denial was overturned and he would be receiving this LIFESAVING transplant! This is amazing news and the family is hopeful that they may have a future together.
Unfortunately, there are massive expenses associated with this procedure that is not covered by insurance. In order to participate, he must have housing for 4 months. This must be done before January 14th, 2016. They must also come up with costs for parking, transportation, and meals. His wife, Valerie, will be a 24/7 caregiver for him. Not only are the costs high, but they will both be off work for a lengthy period of time.
A little about Steve.
Steve has spent literally his entire adult life as a public servant. Immediately out of high school, Steve enlisted in the U.S. Army and served 7 years before discharging to raise his two children. He worked with the Washington State Department of Corrections for 9 years before joining the Clallam County Sheriff's Department as a Deputy. For the last 15 years, he has held various positions in the department and received numerous awards including a Lifesaving Medal. He continues to work while fighting this disease.
Steve has three children, Amanda, Michael, and Cody, who is currently in high school. He and his wife, Valerie, have been married for 17 years. Valerie also works for Clallam County at Juvenile Services. She has spent the last 10 years as the C.A.S.A Coordinator, working to advocate for and better the lives of local foster children.
Valerie has said they were ready to sacrifice for this procedure but was not prepared for the extremely high housing and ancillary costs not covered by insurance. "Knowing someone you love, the father of your children, has a short amount of time to live absolutely make you stop and feel how extrememly precious every moment, every breath truly is."
Steve has dedicated his life serving the public, now it's the public's turn to save his life.
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