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Karrie is an award-winning writer, Intermedia artist, fabric designer, ink-maker, and outspoken disability activist.

A little about Karrie: At age fourteen, Karrie became a healthcare activist, volunteering as a peer educator for a local reproductive health clinic. She organized against wars and for disability rights.

Now Karrie needs the community’s help. Karrie has Chiari-Syringomyelia, resulting in neurological symptoms such as a gait disorder, neuropathic pain, and severe headaches. She also has Ehlers-Danlos Syndrome, which has caused an ascending thoracic aortic aneurysm that has started to expand. Every mm of growth = one step closer to open heart surgery (or worst case scenario: rupture, for which survival is very low). In addition, Karrie has Lynch Syndrome, a genetic mutation that causes cancers all over the body, requiring annual screenings for colon, skin, brain, liver, pancreas, esophagus, bladder and more. Thanks to the community aid so generously given here, Karrie has had a preventive hysterectomy (the MSH6 mutation came with a high risk of endometrial and ovarian cancer) and a preventive mastectomy). Last but not least, at the start of 2024, Karrie got a surprise MH diagnosis that requires highly specialized care and often takes many years.

Updates (30)

August 18, 2024

Thanks to your support, Karrie has now had two surgeries, extensive PT and neurological rehabilitation, access to pain management and MH care, and home modifications. Right now, Karrie needs to raise about $400/month for MH care. An email update to donors shared more details than can be posted here, but suffice to say, it's a very serious MH issue that requires extensive care -- and it is linked with Karrie's other disabilities (both in terms of Karrie's risks for developing this issue when they were a small child and also in terms of prognosis and care for those conditions. Thank you for all the support! Please keep sharing!

April 30, 2023

Thank you for all of the support so far! Karrie needs a double mastectomy to prevent breast cancer. Our max out of pocket is extremely high and we need to raise $10,000 (we updated this because we double checked our max out of pocket and it's bigger than last year -- we had been thinking of last year's out of pocket) by July--for surgery and for additional costs related to care after surgery. Cancer mastectomies take a lot of tissue and require Karrie to go without using arms and a lot of rest and PT afterward to ensure no frozen shoulder or other issues. With EDS, healing is delayed and there can often be problems with the scars, etc. If any revisions need to be done, they will likely be in January and subject to a new out of pocket.

Photo Galleries (3)

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