Hello. My name is Jeff and I am establishing this fund for my wife, Kris. It was a difficult decision to establish this page as neither of us is accustomed to asking for help. However after five years of illness we have found ourselves in a place that requires us to reach out.
In early July 2012 Kris became incrediby ill and had significant delays in diagnosis and treatment. It was finally determined that she had been suffering from Rocky Mountain Spotted Fever and spent the next month in the hospital at MGH. During treatment Kris began to experience a new series of symptoms. These included angioedemas in various spots all over her body, hives and flushing, intense bone pain, GI pain, nausea, diarrhea, and eventually swelling in her airway. These symptoms were intermittent and varied in intensity but were definitely becoming progressively worse over time.
Kris was eventually diagnosed with Mast Cell Disease. Since then her symptoms have resulted in numerous lengthy hospitalizations (frequently lasting a month or longer). She has had a series of complications including ischemic colitis, severe gastric reflux that required surgery to her esophagus, and at one point the need for a gastric tube for feeding (which her body actually reacted to causing even more problems).
Last year while having the flu, she developed a whole new set of symptoms. She has been diagnosed with Chronic Systemic Capillary Leak Syndrome. This has caused fluid to leak from her capillaries into the surrounding tissue resulting in severe generalized edema as well as at times, unstable blood pressure. Area specialists believe Mayo Clinic is better equipped to treat this highly rare condition.
Kris traveled to the Mayo Clinic in Minnesota where she was seen by doctors from several specialties, including an expert in capillary leak. The folks at Mayo agree with the SCLS and Mast Cell diagnosis and they feel that all of this is likely related to the delay in treating her Rocky Mountain Spotted Fever. However they need to be able to conduct more testing before they can develop a plan to treat her as the edema is causing problems with organs.
Kris is going to need to be able to travel back and forth to the Mayo Clinic in Minnesota on a regular basis to continue her evaluation and hopefully receive at least her initial treatment. She needs to return to Mayo next week, and once or twice a month, for the next several months.
This is where you come in.
I desperately want her to be able to get the treatment she needs by the specialists at Mayo, however I just don't have the means. So I'm asking for whatever help you can give us. Anyone who knows Kris will tell you that she is always there when people need her....even while she's been sick....now she needs folks to be here for her.
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