In a conversation with Jenny, I asked her to describe how this disease makes her feel and what she described broke my heart. She said, "It completely robs me of any and all energy. My waist has grown 8 inches in a asingle day from the amount of fluid I retain. I have horrible kidney and back pain and I get fevers often and feel like I have the flu. My feet, legs, arms, hands, and waist swell. Sometimes my knees swell to the point that it's painful to walk. My hair was falling out and I can't eat or sometimes chose not to because it is too painful."
Jenny was selected to participate in a study at Bethesda, MD National Institute of Health (NIH). There's a drug that has a HUGE potential of putting her disease into remission. In the rest of the world this drug, Rituxan (http://www.rituxan.com/) is showing up to 55% remission!! This study would help many other people suffering from this disease and it would open up the insurance gates allowing them to get this med too.
The study is two years long and would require Jenny to commute from Billings, Montana to Bethesda, MD at least once every three months. She has her initial appointment with NIH November 6th-8th and a follow up two weeks after. With the date being so close, and the follow up right after, I wanted to help Jenny and her family out in anyway I could, so I thought I would try to raise funds for her trips. They will be paying for airfare roundtrip to Bethesda and back, a hotel for at least the first two visits, estimating 3-4 nights each visit, a rental vehicle for transport or funds for things like public transportation, Uber, or Lyft, and meals. All of these expenses fall on Jenny and Jon 100%.
Jenny has the best heart and goes out of her way for everyone who is in any kind of need or even just to make them smile. She would never ask for help, but as a friend who has watched her journey over the last few years I want to help her. Any kind of assistance we can provide Jenny, her husband Jon, and their children would be a HUGE leap towards Jenny get her life back, Jon get his wife back, and the kids getting their Mama back!
I am setting an initial goal of $3500 to help take some of the pressure off of Jenny and her family and am asking that even if you cannot donate at the moment, please share her story and help her make it to Bethesda!
- Nora Wilson
- Karen Tyra
- Tom Rodgers
- Rochelle Beley
- Ashley Unruh
Organizer and beneficiary
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