Summer was born in Portland, OR, June 12, 1977. She passed away peacefully at her home on June 24, 2009 in the company of her beloved; her family, her loyal companion kitties, close friends and trusted physician. Summer fought a decades-long battle with an undiagnosed disease, which ultimately dominated her body but never her spirit.
A life of never-ending doctor’s appointments, pills, poking and prodding. That’s what Summer Stiers has been doing for 20 years. The unique story of this Bend woman is making national headlines because after all this time the cause of her illness is still unknown. At 31 her hair is almost completely gray. She hooks up to a dialysis machine every night and must take hundreds of pills a week, but everyone who knows Summer Stiers knows she’s a fighter. Since the age of 10, Summer’s body has slowly collapsed before her eyes, and starting with her eyes. After many doctor’s visits and consultations, it was determined that one eye needed to be surgically removed. This was done on Summer’s 14th birthday. That’s when she and her doctors first knew something serious was wrong.In the past 20 years, she’s seen both of her kidneys fail; bone tissue death in both of her legs; intestinal bleeding; osteoporosis and cavernoma of the brain, not to mention constant pain and fatigue.What’s even more painful: With all these symptoms there is still no diagnosis. “I can’t run or jump or do a jumping jack without worrying about my legs giving out,” said Summer, “so not being able to do the stuff that a normal 31-year old can do can be frustrating.”
Summer started hyperbaric oxygen therapy last year and she and her doctors have seen huge improvements in her health. “The treatments have revolutionarily made her better, and I’m afraid it’s something she’s going to have ongoing into the future,” said Dr. Robert Pinnick of Bend Memorial Clinic.“It’s really a life-saving thing for her and it’s out on a limb because she has a disease that there is no diagnosis for,” Pinnick said. “There isn’t anyone out there like her.” Unfortunately for her, without a diagnosis code, insurance will not pay for the treatments much longer. “It’s just the matter of a code,” she said, frustrated. “Make up one – give me a code!”In the search for a diagnosis, Summer was accepted into the undiagnosed diseases program at the National Institutes of Health. In December of 2008 she underwent a week of tests at NIH and is hoping someone will finally give her some answers. “Maybe I’ll get diagnosed and maybe that will help other people,” she said. “But mostly it was a chance to get it on record so when I’m gone and someone else has these same things they won’t be lost like I’ve been.”The pills, the pain, dialysis, doctors and therapy – sometimes Summer asks herself, is this all worth it? “You get to a point where you ask yourself, ‘How long to I do it before I don’t do it anymore?And it’s something that’s hard to ask yourself, but you just get to that point.”“Is this worth it?” she asked, before answering: “And right now, it’s worth it.” posted March 19, 2009 By Makayla Zurn, KTVZ.COM
The Bend Bulletin News – a 4 part article following Summer’s illness, treatment and final passing.
- A healthy child grows increasingly ill
- A national agency looks for a cure
- The woman returns home with no diagnosis
- A spitfire to the very end
February 19, 2009
“What’s Wrong With Summer Stiers?”