Teen riding 1,500 miles to raise money for disease research

He is taking the journey for his mother, but his travels are touching the lives of many.

Judi Collins of Jacksonville couldn't wait to tell Stephen Wright how much his effort, "Chris' Journey," has touched her heart.

Stephen, 17, is spending his two-week spring break peddling his bike 1,500 miles from Jacksonville, Fla., back to Holliston, Mass., to raise money for the Amyloidosis Foundation and raise awareness for this rare disease that struck his mother, Chris, in 2008.

Collins was diagnosed with the same disease in Feb. 2002, at the age of 50.

"What Stephen is doing is remarkable," Collins said. "It ... shows so much maturity and is such a tribute to (his) mother."

Stephen traveled through Jacksonville Thursday from Wilmington to New Bern, stopping at The Kettle Diner for lunch and to meet Collins.

"I know your parents are very proud of the three of you, I know I sure am," Collins told Stephen, and his cousin Andrew Yacka, 19, and friend Aislinn Shea, 17, who are accompanying him on the journey.

Stephen said the trip has gone well so far. He said it's nothing compared to what his mother has endured with the disease.

"When it gets tough, all I have to do is think about what my mom went through," he said.

Amyloidoses are a group of diseases that result from a protein folding abnormally, which causes deposits of amyloid fibrils in organs throughout the body and can affect organ function, according to Amyloidosis Support Groups, Inc.

Since it is a rare disease, little is known about it in the medical profession.

Collins and the Wright family want to educate as many people as possible about amyloidosis in the hope those suffering get diagnosed more quickly -  the longer the disease goes undiagnosed, the more harm it can cause.

Stephen said many suffering from the disease die because it takes so long to be diagnosed. Many die without ever getting diagnosed, he said.

Collins has attended medical meetings at Onslow Memorial Hospital informing others about the disease she knows well.

"I want to make sure every doctor in the hospital knows about it," she said.

Stephen's mother was luckier than most in getting diagnosed quickly, Stephen said. She had been ill for about eight months, but read an article in a local newspaper about a woman with the disease.

"My mom read the article and related to her symptoms, so she took the article to her doctor," who tested for it, Stephen said. "She still might not be diagnosed if it had not been for that article."

It took five years before Collins got the proper diagnosis and began treatment.

"Until then they just treated the symptoms," she said.

She endured test after test, until a kidney biopsy sent to Duke University revealed the disease.

"It was the first case the nephrologists had ever seen," she said.

There is currently no cure for amyloidosis.

Collins has been through a clinical trial and two stem cell transplants, the first of which was unsuccessful. She has been in remission since September of 2005.

Stephen's mom went through a stem cell transplant and high dose chemotherapy at Boston Medical Center this past summer and continues to fight to regain strength, but her battle with the disease is far from over. She takes countless drugs and struggles to regain weight lost.

"My dad created a huge spreadsheet for her just so she could keep track of it," Stephen said. "But looking at her last July compared to now is unbelievable, she's doing so well. Her two biggest hopes are to be able to ski and play tennis again."

Stephen's goal is to raise $10,000 for amyloidosis research.

"I don't know what I have raised, but before I left (on the trip) the donations had been going extremely well," he said.

To donate, visit www.amyloidosis.org/contributions.asp or send checks, made out to Amyloidosis Research Foundation, to Stephen Wright at 20 Rolling Meadow Drive, Holliston, MA 01746.

To follow Stephen's trip, visit his Web site at www.chrisjourney.com.

Contact Topsail area reporter Suzanne Ulbrich at sulbrich@freedomenc.com or 910-219-8454.

Medical mystery

Diagnosis of amyloidosis is difficult because symptoms can resemble other medical problems. Symptoms can include:

• unexplained weight loss
• leg swelling
• arm and leg numbness
• carpal tunnel symptoms
• changes in nails
• foamy urine
• shortness of breath
• fatigue
• appearance of black eyes
• problems swallowing

Treatment depends on which type of amyloid protein is present in the body, where it is being deposited and how it is affecting organs. Medications, injected chemotherapy and stem cell transplants are used to treat the disease. There are clinical trials available for some, and on rare occasions, organ transplants are needed. There is no cure.

Source: Amyloidosis Support Network, Inc.