Melanie's Medical & Moving Fund

Imagine the worst muscle cramp you have ever had. It usually lasts a few seconds, maybe a minute. Now imagine that same cramp hitting all of the muscles in your body at the exact same moment and lasting for hours multiple times a day. These are the seizure like muscle convulsions caused by Stiff Person Syndrome (SPS). That's the closest way I can describe what someone with Stiff Person Syndrome goes through daily. On top of that it usually coincides with other symptoms such as migraines, chronic fatigue, uncontrollable anxiety, severe stomach cramps and bloating resulting in unwanted weight loss, etc. SPS is also usually paired with another condition, cancer and arthritis are just a couple.  The cause is unknown and there is no cure. All the doctors can do it try to slow it down and minimize the symptoms. This very rare disorder affects 1 in a million+. However, I personally believe it is more common. 

My sister was diagnosed last year just a month before her 35th birthday. She had been to more than a dozen doctors and specialists for over 2 years. She was lucky to be diagnosed so soon since most physicians have never even heard of it. She has also suffered from a dramatic weight loss going from a normal 130lbs to as low as 104lbs. She gets 3 IVIG infusion treatments every 3 weeks currently to try to increase her immune system and reduce the symptoms. Each treatment costs roughly $14,000. Right now she is in jeopardy of losing her health insurance through her disability claim simply because the people that review the claims aren't familiar with the disorder. We are appealing the it with the help of her wonderful medical team and hope to be successful. This disease has changed her life in all aspects. Due to the symptoms (including seizures, migraines, muscles stiffness, uncontrollable pain etc.) she is unable to work and currently on a very fixed disability income. It has been decided that it is best if Melanie and her daughter, Layla 7 yo, come home to Washington, where she has support and as much love, and assistance as she can use. It will be a tough journey for Melanie and Layla, but her health, wellbeing and particularly her daughter are the priority. She is moving back home to Washington from New York where she has resided for the last 8+ years. She needs support from her family and friends to help out with getting her to treatments, or being there if she needs assistance in case of a bad episode and assisting when needed with her daughter. It has been a very rough year and she doesn't ask for help very often but she needs it. Help me spread awareness of this rare disorder. I challenge you to see if we can get to 500 shares.  If you can't donate money please donate just a few seconds by sharing this post. If we can share this 500 times, that means 500 people or more will be aware of this rare disorder. I believe there are more people out that have SPS. I believe they aren't diagnosed with it or misdiagnosed with other conditions because there isn't enough awareness of this disorder. Sharing this post may help someone you know. Help me spread the word on this very rare, progressive and debilitating disorder. 

Donations

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  • The Knudsens 
    • $25 
    • 41 mos
  • Anonymous 
    • $25 
    • 41 mos
  • Shelley McKenty 
    • $25 
    • 41 mos
  • Anonymous 
    • $50 
    • 41 mos
  • Diane Morgan 
    • $100 
    • 42 mos
See all

Organizer

Holly Andren 
Organizer
Maple Valley, WA
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