He’s still in the game
MS patient undeterred by insurance denials
By Jennifer L. Boen
Mike Riley, left, spends time with friends, from right, Jared Busch, Chris Heidenreich, Jon Ehle and Andy Ehle on Sunday at Jon Ehle’s apartment. Riley, who has multiple sclerosis, is seeking a stem-cell transplant in China after his insurance company rejected his appeals to have a transplant in the U.S.
Editor’s note: In February, The News-Sentinel 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 was in the process of making its last allowable appeal to have the transplant covered by insurance.
In baseball, it’s three strikes and you’re out. For Mikey Riley, it was four strikes from the family’s insurance company that could have benched the 20-year-old Fort Wayne man.
But Riley isn’t one to give up. His will to live and optimism are keeping him in the game. The rules of the game have just changed a bit.
Their insurance company denied the Rileys’ final appeal to pay for the $300,000 transplant – the company said it is experimental – so the family is seeking treatment on the other side of the world at a fraction of the cost.
Friends and family are hosting a fundraiser April 19 to raise money for Riley to get a stem-cell transplant in China.
Riley hoped to have an autologous stem-cell transplant this month at Northwestern Memorial Hospital in Chicago, a treatment used with about 150 other MS patients. His own cells would be removed from his body, then chemotherapy would be used to kill his disease-causing cells. The stem cells then would be “tweaked” and put back into his body to grow new myelin, the protective sheath around nerve fibers.
MS damages or destroys the myelin, which interrupts normal transmission of electrical impulses to and from the brain.
Scientists at the American College of Cardiology’s annual meeting last month in New Orleans reported they had grown new heart vessels in the same way. Stem cells were extracted from 23 patients’ thighs and grown in a lab using special techniques to induce them to become heart-tissue cells. The cells were then injected directly into the patients’ hearts. All showed improvement in cardiac functions.
After the insurance company issued its final denial, Pat Riley, Mikey’s father and a Lane Middle School teacher and coach, asked his son if he would consider other options, including going out of the country for treatment.
“But I really didn’t know what to do or where to go,” said the 2005 Leo Junior-Senior High School graduate, whose MS was diagnosed soon after graduation. He had been accepted into the Merchant Marines Academy in Traverse City, Mich., which he attended for about nine months until his health worsened.
Not long after his dad mentioned looking outside the U.S. for treatment, an American living in China connected with a program called Stem Cell China read Riley’s story in the Feb. 13 News-Sentinel. He contacted the American liaison for Stem Cell China, Kirschner Ross-Vaden, who lives in Chicago.
She told the Rileys about Stem Cell China and the program’s success in using umbilical-cord stem cells with MS patients. These cells, which can be coaxed to become cells specific for myelin, are collected from the cord blood of newborns, then injected into the patient. The family researched the program, praying together about it.
“I can tell his tremors are getting worse,” Diana Riley said of her son’s symptoms. “We need to do something before he can’t walk and is in a wheelchair.” He also has periods of extreme vertigo, unrelenting vomiting and more recently, hearing loss in one ear.
Riley said his Indianapolis doctor, an MS specialist, has told him that because the newest medications have not helped him, a stem-cell transplant is his only hope to stop the disease. The doctor, he said, would neither endorse nor refute the Stem Cell China program. But Riley began e-mailing an MS patient involved in the China program.
“It has really helped him,” Riley said. “The China transplant is not a cure. It’s a treatment … lasts about five years. Then you might have to go back for another transplant.”
Not everyone sees long-term results. But the treatment also does not require Riley to undergo chemotherapy that kills not only his cells that have gone awry but also all his good white cells. That would leave him vulnerable to infections until new white cells and the stem cells begin growing again. The goal is for the new cells to regrow healthy myelin around his nerves. With MS, the protective myelin covering of nerve fibers is damaged or destroyed, thwarting electrical impulses that travel to and from the brain.
“That was something that really bothered me,” he said of the chemo.
As much as the family has researched Stem Cell China, “We know we don’t have all the answers,” Diana Riley said. “But what do we have to lose? Mikey really wants this.”
The cost, including airfare for Mikey and Diana Riley, is less than $30,000 – one-tenth the cost of the U.S. stem-cell transplant, which is, albeit, considered a permanent cure.
Donations through guidance of the National Transplant Assistance Fund have raised $14,500 so far. Riley is confident friends, including fellow employees of Vision Scapes Lawn & Landscape in Fort Wayne and supporters of the local MS Society, will turn out for the April 19 fundraiser to help him complete his transplant goal.
“Every bit of me is ready to leave and experience this. I’m excited to see what kind of results I’ll have. I’m trusting God,” Riley said.
Ways you can help
What: Fundraiser for Mikey Riley, who has an aggressive form of multiple sclerosis and is in need of a stem-cell transplant. There will be snacks, silent and live auctions, and live music.
When: 6-9 p.m. April 19
Where: Landmark Conference & Reception Centre, 6222 Ellison Road, just south of the intersection of I-69 and U.S. 24
Cost: $25 per person; $175 table for eight; $500 for company sponsorship, including table for eight and special recognition
Items to be auctioned: Citizens watch and other jewelry; gift baskets; Civic Theatre tickets; restaurant and merchant gift cards; signed bat from the San Francisco Giants; signed Komets hockey sticks; and $1,000 of landscaping services from Vision Scapes of Fort Wayne.
RSVP: Call 471-8760 by Saturday
If you cannot attend: Tax-deductible donations can be sent to the National Transplant Assistance Fund, 150 N. Radnor Chester Road, Suite F-12, Radnor, PA. Write Mikey Riley’s name on the memo line. Contributions also are accepted online at www.transplantfund.org.
Now, there are a couple of errors in the article, but it isn't a big deal. I am quite pleased with it. Served it's purpose, and I am quite happy because of it. Nothing but smiles on my end of the stick.
ps Something very strange is going on. when i am around this chick. I feel kinda funny inside. Almost as if someone is poking my insides from the inside of my body!! What are you doing to me CHELSY? ;-)