A Long Journey Toward Health

StemCellsChina.com

Donnerstag, 17. Mai 2007 um 08:00 Uhr

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Source: Fort Wayne

Mikey Riley heads to China for a stem cell transplant

Editor’s note: In February, The News-Sentinel first told the story of Mikey Riley of rural Fort Wayne, who has an aggressive form of multiple sclerosis and is in need of a stem-cell transplant. The family’s health insurance company denied payment for the transplant so Riley sought other options. Today is the first in an occasional series of stories and journal entries from Riley, who is going to China for the health care he desperately needs.

Twenty-year-old Mikey Riley today began the longest journey of his life – not just in miles, although they are aplenty. From Indiana to Shenyang, China, where he is headed, is about 8,000 miles by air.

It is a journey of hope and faith and a quest for health.

Since early this year, the Fort Wayne man has been seeking a stem cell transplant that doctors at Northwestern University in Chicago and in Indianapolis said was his only hope to stop his multiple sclerosis.

When Mikey and his parents, Pat and Dianna Riley, realized they could not pay out of pocket for a $250,000-$300,000 stem cell transplant in the United States, they opted for a program called Stem Cell China in Shenyang. The stem cell transplant there is about $23,000, plus travel and living expenses.

A U.S. liaison for Stem Cell China heard about Mikey’s case from the story in The News-Sentinel and contacted him. After Mikey talked to several other people with MS who had gone to Shenyang, and after considering the matter in prayer, he decided China was the direction to go.

In the next two months, family, friends, neighbors and strangers helped raise more than $40,000 to cover the transplant and related expenses.

“It’s just so awesome. I’m just amazed at the generosity of people,” he said after an April 19 benefit at Landmark Conference and Reception Centre in Fort Wayne.

A few weeks ago, a neighbor put fliers on every house in the Leo Crossing neighborhood, telling people about Mikey and his need.

“The flier said people could turn their porch light on if they wanted to contribute,” Dianna Riley said. That night, neighbor Carolyn Juergens and her son Andy collected more than $800 for Mikey and his mom, who is accompanying her son to China.

Wednesday afternoon, as Mikey and Dianna packed suitcases for what they anticipate to be a six-week stay at the hospital in Shenyang, it was more than just clothes, snacks, MRIs and Mikey’s medicine they were packing.

They are taking along the love, prayers and support of the people of Fort Wayne, Dianna said.

Pat Riley, who is a teacher and coach at Lane Middle School, stood in the kitchen, heating water for his wife’s coffee. Sending a child halfway around the world for medical care is disconcerting for any parent. But also, like most any parent, he wants to give that child whatever hope there is.

“This has been several months in the planning. They just need to go now,” he said.

Had Mikey been able to have the transplant at Northwestern, it would have involved harvesting some of his own stem cells and tweaking them so only healthy cells were retained, then putting them back in his body after the disease-causing cells in his body were destroyed using chemotherapy.

In Shenyang, however, doctors will use umbilical cord stem cells collected from the cord blood of newborns. These cells can be coaxed to become cells specific for myelin, which his nerve fibers lack, then will be infused back into his body.

Mikey knows the Chinese treatment is temporary, in most cases. It might need to be repeated in five years, perhaps sooner. He also knows U.S. doctors are skeptical.

“I’ve received no support from my doctor at Northwestern or in Indianapolis,” he said. But for now, he said it’s his best shot at living a normal life – a life without tremors, severe headaches and vertigo, side effects from medications and other complications.

He and his mother will live in his hospital room throughout the treatment, which will involve multiple infusions of stem cells. Mikey was contacted recently by another American family at the hospital. The woman, paralyzed from the waist down in an accident, has been undergoing stem cell treatment since January.

“They are seeing a difference,” Mikey said. So the woman, her husband and their three children have decided to stay longer and continue treatments. But they have run out of certain supplies they cannot buy in Shenyang, so they gave a list to the Rileys, who packed a 70-pound box of items that will be shipped.

That family is ensuring the Rileys will have a microwave, refrigerator, a crockery cooker and a few other essentials needed for their hospital-room stay, Dianna said as she poured hand sanitizer, shampoo and other products into small travel bottles.

“We know there is a Wal-Mart there, but they may not have the things I like to eat,” including Skippy natural peanut butter, a staple in her diet. She packed several jars in her suitcase.

Translators will be available to them when they land in Shenyang and as needed at the hospital. “I should have learned a few words. I don’t know any,” Dianna said, a little panicked at the thought of trying to find their way in a foreign country.

“It’s all going to go fine,” Mikey said. “I’m ready to experience the culture. I’m not really worried. I’m pretty excited.”

Pat said his son, who attended the Merchant Marine Academy in Michigan until MS forced him to drop out in spring 2006, has always had a tenacious spirit.

“For 20 years, we said there must be a reason for it,” he said. “Maybe this is it.”

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