- Associated Press - Sunday, March 27, 2016

LONGVIEW, Wash. (AP) - Jerry and Jina Ezell remember well the day seven years ago when doctors diagnosed their son Cody with a rare disease that had almost killed him. After years of struggling with illness and misdiagnosis, the news came as a welcome relief.

“We were dancing in the halls” of the hospital, Jina said. “We were so thrilled.”

Though Cody, now 21, still gets sick often, he’s able to work full time and attend Lower Columbia College.

The Ezells’ story is a lesson in perseverance. They agreed to share their story in conjunction with Rare Disease Day, which was Feb. 29, and to offer hope to other families with a medical condition that may confound doctors for years.

Cody suffers from chronic granulomatous disease, a genetic disorder in which white blood cells called phagocytes are unable to kill certain bacteria and fungi that enter the body. As a result, people with the disease are susceptible to recurrent infections and get areas of inflamed tissue called granulomas.

As Cody put it, “it causes a lot of systems to go haywire.”

When the condition was diagnosed, the Ezells were told only five other people in Washington have it. According to the Immune Deficiency Foundation, only 1,200 people in the United States are affected by CGD.

Cody’s condition might have been diagnosed earlier if his childhood had been stable. Most cases of CGD are diagnosed before age 5. Cody was removed from his biological home frequently between the ages of 4 and 8, Jina said. “He was already going through a lot of emotional abuse,” she said.

“If I remember correctly, there were eight different foster homes I was in,” in Longview, Cathlamet and Vancouver, Cody said.

When Cody was 10, the Ezells adopted him and three of his biological siblings. Jerry, 51, and Jina, 47, also have a biological son and another adopted child. The family (and their three King Charles Cavalier Spaniels) lives in the hills above the Kalama River.

When Cody joined the Ezell family, he’d get ear and nose infections often. “His nose was crusted all the time,” Jina said. “Plus, he was tiny,” weighing only about 85 pounds.

The Ezells later found out these are common symptoms for children with CGD.

Even family members didn’t want their kids around Cody, fearing his condition was contagious. It’s not, it’s a genetic disorder.

Misdiagnosed at first

By the time he was 14, Cody’s symptoms had worsened. “He almost died,” Jina said. “It was horrible. He looked like a professional wrestler with his neck swollen so big.”

Cody felt like he was either too hot or too cold. “During the middle of the summer heat I’d put five winter coats on,” then take them back off, he said.

“We couldn’t go anywhere because he had to go to the bathroom all the time,” Jina said.

Cody was misdiagnosed as having Crohn’s Disease, which is an inflammatory bowel disease that can affect any part of the gastrointestinal tract.

He was prescribed a medication that treats Crohn’s but can lessen the ability to fight infection - just the opposite of what Cody needed.

“He was a walking dead person - and not really walking because he was just lying around,” Jina said. “I wasn’t sleeping because I was afraid that he wasn’t going to wake up.”

A Portland doctor started delving further into what ailed Cody. “He would take Cody’s case to all the (medical) conventions,” Jina said. “He became discussed as my mystery child.”

Cody was finally admitted to Legacy Emanuel Medical Center in Portland for three weeks of intensive testing.

“The disease is so rare they didn’t know what tests to run,” said Jerry, who graduated from the LCC nursing program last year.

A doctor finally diagnosed chronic granulomatous disease and prescribed the appropriate medication, Actimmune.

“He woke up. His body temperature regulated and he was back to normal,” Jina said.

“Through it all, he always had a smile on his face,” Jerry said.

“I was always positive through the whole thing,” Cody said. “It was a blessing to find it out.”

Finding others with CGD

Gina says there is more understanding in the medical community about CGD than there was when Cody was growing up.

Last summer, the Ezells and Cody went to Chicago, for a meeting of others with the same disease. “We met people for the first time with CGD,” Jina said. “Some of them have had it since they were babies.”

“I just asked them in general about what medications do they take and what they don’t take and why,” Cody said. Now he has Facebook friends who have CGD.

Today, Cody gives himself three weekly shots of Actimmune as well as 16 pills each day of other medications. The Ezells’ health insurance covers the costs.

Now that his treatment has stabilized, Cody said, he can lead a fairly normal life. However, he said “you don’t know when you’ll get sick. I can get sick at any time. It’s not if - it’s when.” He was back in the hospital for a week in December.

Cody stands 5 feet 2 inches tall. “I don’t think I need to grow any more,” he said. “Big things come in small packages.”

The life expectancy with CGD is currently 50 years, but with improved medications, Jina expects that to rise. “I have no doubt he’ll lead a long life,” she said. “He has great hopes and great dreams.”

One of those dreams is to follow his father into the nursing profession.

“I’ve always been interested in the whole medical field,” he said. His empathy for patients increased during his own stints in the hospital, he said.

Cody is currently working full time at an assisted living center. He is also taking courses at LCC with a goal of becoming an RN.

He likes to play drums and guitar. “I love to make origami,” he said, and going to Bible study at Shiloh Christian Fellowship in Rainier. He’s gone on mission trips to Mexico and Haiti.

He also plays basketball and soccer on Special Olympics teams. He likes hunting for deer and elk. “I go rifle hunting,” he said. “My dad is bow.”

Cody’s active life is part of his mother’s message to other people facing rare or undiagnosed diseases.

“My big thing is that there’s always hope, no matter what the disease is,” Jina said. “As a caregiver, you’re the one who has the hope for that child.”


Information from: The Daily News, https://www.tdn.com

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