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Looking for healing

Terri Eubanks, Ashland’s community preparedness coordinator, has launched a GoFundMe appeal to pay for a long-sought treatment for her daughter Willow Bays, 20, who has suffered for the past decade from lethargy, nausea, anemia and vomiting because of an autoimmune disorder called collagenous duodenitis.

Eubanks has insurance from her city job helping residents prepare for “The Big One” earthquake and other natural disasters, but she is asking for help with $4,500 for lodging, meals and a rental car as they seek medications or surgeries with a specialist at the Mayo Clinic in Minnesota.

Willow graduated from Ashland High School two years ago and has been focusing on English and writing at Portland State University, while working in retail full-time and mastering her talent as a digital artist, making posters, T-shirts and album covers for bands.

“It’s been a pretty rough journey, up and down continuously, hoping to find medications and/or procedures to help with my chronic pain,” says Willow.

She is dealing with a second rare affliction called collagenous gastritis, and despite treatments at the Oregon Clinic and Oregon Health & Science University in Portland, physicians have been unable to get it under control, says Eubanks, and her daughter has been unable to continue with college.

The ailment has resulted in an over-production of collagen and, in response to that, an over-production of stomach acid, followed by acid-blocking meds and lessening of the inner lining of the stomach, says Eubanks. Multiple colonoscopies and endoscopies have shown wear that makes her stomach “look like that of an 80-year-old,” she said.

Causes and cures of autoimmune disorders can be mysterious, but Eubanks says her doctor at the Oregon Clinic has connected her with a Mayo specialist working on the cutting edge of the ailments, and they need to travel there to participate in the latest research and trials, says Eubanks.

“I’m really struggling. We don’t have answers yet. We still don’t understand what (autoimmune) means,” says Eubanks. “I get that it’s rare. It’s super scary that they don’t know how to help her. Is she going to live like this, or is it going to kill her? Because you can’t live without a stomach. I call all the time to remind her to eat healthy and get fresh air.”

Even if the Mayo physician can’t help her, Eubanks says, his work will add to the research and help other children. It’s hard when you don’t know (causes and cures). I keep Googling the newest information on it.”

Eubanks says she chose the GoFundMe goal “based upon both of us flying over and likely staying in a hotel a week or so. The diseases are so rare our insurance covers very little related to testing and treatment, specifically with experimental undertakings. ... The lining of her stomach and duodenum are shedding away. ... Our hope is to find out if any other treatments to stop it exist, or if there are other options with transplants.”

Willow was warned off any athletics in her teen years, but lately she has taken up lots of exercise and running.

“I’m a bit stronger than they think. ... I’ve got a good group of friends up here, and we do barbecues, go to movies on weekends and have dinners together. My boyfriend is in a band, and we surround ourselves with music.

“Emotionally, I’m pretty down a lot. Every day I have pain with my body, ever since I can remember. Spiritually, I’ve been OK. Working out calms my body. I’m doing more yoga and meditation, and it relaxes me.”

Eubanks says other parents have advised her to up her funding goal but, “I have decided against moving the goal post; however every single cent will be spent directly on Willow’s direct expenses exploring these diseases and treatment (if any).”

To help go to gofundme.com/willow-getting-to-the-mayo-clinic.

John Darling is an Ashland freelance writer. Reach him at jdarling@jeffnet.org.

courtesy photoTerri Eubanks and her daughter Willow. Willow has a rare autoimmune disease and needs money for a trip to the Mayo Clinic in Minnesota.