One memorable day last year, Sharon Fry of Davenport drove straight through to Denver, picked up her son Cody and immediately brought the young man back to Iowa City for emergency medical treatment.
He ended up being hospitalized for three days that time. In the past four years, she's helped him through frequent visits to doctors and hospital stays as he recovered from episodes in which he coughed up blood. In 2011 and 2013, he was placed in chemically induced comas to aid his recovery.
Cody, 22, has been diagnosed with a rare disease called mediastinal fibrosis, or fibrosing mediastinitis. It is the rarest form of the fungal disease called histoplasmosis, and his young life is at risk every day.
"Not knowing what will happen, that is the hardest part," his mother said.
Rare Disease Day
A rare disease is defined as one that affects fewer than 200,000 Americans. There are an estimated 6,500 such diseases identified by the National Institutes of Health, or NIH, in the United States.
In Cody's case, there are only about 200 other people with mediastinal fibrosis in the U.S., although his mother thinks the actual number may be more than that because so many are not correctly diagnosed.
Mary Dunkle, the vice president for communications with the National Organization for Rare Disorders, or NORD, in Danbury, Conn., said most Americans know a person with a rare disease. When all such illnesses and the people afflicted by them are added up, it's estimated that some 25 million persons in the U.S. are affected, she said
"About one in 10 patients have a rare disease," Dunkle said, adding that getting a proper diagnosis is a major challenge and a focus of her organization.
The situation has improved in recent years, with more overall knowledge and visibility, especially through agencies such as the NIH, she said.
NORD uses a zebra for its symbol. The reason is that in teaching the art of medical diagnosis, physicians learn the metaphor that if one hears a hoofbeat, it's probably a horse. However, NORD points out, a hoofbeat is also a sound that a zebra makes, so it should be considered as well.
Rare Disease Day was established in Europe during 2008 by NORD's partner, Rare Diseases Europe, or EURODIS. It began to be observed in the U.S. the next year.
It always takes place the last day of February. This year's theme is "Join together for better care."
Patients should not feel they have to go it alone, Dunkle explained. "There can be a lonely feeling with a rare disease diagnosis," she added.
Cody Fry's story
Cody, the son of Sharon and Sheldon Fry, graduated from Davenport West High School in 2010. He was healthy, stood 6-foot-1 and weighed 300 pounds. An anime enthusiast, he enrolled at Scott Community College with the intention of getting a degree in computer gaming design.
Just after his 19th birthday in 2011, he began coughing and vomiting, and suffered a sudden weight loss of more than 40 pounds. He dropped out of college because the illness prevented him from keeping up with his classes.
Doctors tested the young man for acid reflux and asthma, but they initially could detect nothing wrong. A blood sample finally identified the histoplasmosis infection. A subsequent CT scan showed a 3-inch mass between his lungs and near his heart.
It is inoperable.
His mother describes the mass "like cotton candy in your chest, which wraps around the organs and hardens."
Millions of Americans get the histoplasmosis infection, which is especially common in both the Mississippi River and Ohio River valleys. The immune system in most people is capable of fighting off the fungus. NORD's research shows that most experience a flu-like illness and recover in due time.
The very severe reaction that Cody had occurs in only four of every 100,000 people who happen to inhale the microbe that causes the infection, according to NORD. Basically, his immune system overreacts to the fungus and grows out of control, his mother explained.
Quality of life
These days, Cody breathes with a whistling sound. That's due to the mass pressing on his lungs, bronchial tube, heart and esophagus, his mother said.
Cody has a girlfriend who lives near Denver. Both of them like to attend anime conventions and portray characters in video games based on anime, a Japanese form of animation.
He is treated by a team of medical providers at University of Iowa Hospitals and Clinics in Iowa City. Because his disease is so rare, the Fry family has him treated only there since the hospital's doctors understand his rare condition and can react appropriately in an emergency.
That's why Sharon raced to Colorado to pick up her son and returned him to Iowa City in March 2013. That serious coughing episode threatened his life.
He is in a weakened state because his blood is not fully oxygenated, which affects the muscles, his mother explained. And if he exerts himself too much, it can result in one of his medical episodes.
Cody once hoped to hold down a normal job, but he cannot work because of his condition and is on disability.
Sharon Fry's activism
Once her son was diagnosed, Sharon had a choice: She could sit back and watch him deteriorate in front of her eyes or she could take action. She has chosen the latter option, putting together a Facebook page for Cody and others with mediastinal fibrosis.
She is also in the process of setting up a nonprofit organization with the aim of raising funds for others in her family's situation. While most medical costs are covered now by state health insurance programs, there are incidental expenses such as transportation, lodging and other various expenses associated with supporting loved ones in a critical medical situation.
Sharon has crafted artistic magnets, bracelets with a navy blue motif and bumper stickers that she sells. She also collects donations while standing outside businesses such as Walmart, with the money then deposited in a bank account to assist other Iowa families.
"I wait for better weather for things like that," she said with a smile.
Daughter, Ashley, 16, is a high school sophomore and adds to her mother's activism. Today, for Rare Disease Day, she will speak to her classmates about illnesses afflicting people like her brother. She has crafted a poster to help explain mediastinal fibrosis.
Right now, Cody has four pulmonary stents between his heart and lungs that are propping open passageways to help him breathe. The family is waiting to see how well the stents work.
"We don't know what the future will bring, but he has to live his life, too," his mother said.