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Taking their challenge to China

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Photo by Dan Lassiter

Brandon Meinke, 4, who has spinal muscular atrophy, plays with toys on the floor of his Janesville bedroom.

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Photo by Dan Lassiter

Brandon Meinke takes medication to help strengthen his muscles and increase protein. An experimental powdered drug costs $3,000 per month.

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Photo by Dan Lassiter

Brandon Meinke's knees are stained from scuffling around on the floor of his home to get around.

JANESVILLE — Ron Martin's miracle would be to see his 4-year-old grandson walk off the airplane when he returns from a trip to China next month.

Martin admits that might be too much to ask, but he'll take any improvement stem cell implants will make for Brandon Meinke, who was diagnosed about 18 months ago with spinal muscular atrophy.

Martin has held several rummage sales and a couple of benefits to raise money toward his goal of $30,000 for the treatment that could change the child's life.

But he's not quite there yet. A rummage sale this weekend will be his last push to help pay for the $5,000 plane tickets.

"At this point in time, it looks that (the stem cell injections are) the only thing out there that could help him," Martin said.

Brandon will leave Friday, Oct. 3, with both of his grandmothers and will return Saturday, Oct. 25. An American doctor will do the procedures at Qingdao Cheng Yang Peoples Hospital in Qingdao, China, Martin said.

The disorder

When doctors diagnosed Brandon, they said he would be in a wheelchair permanently by the time he hit adolescence.

"It took six months," Martin said.

The genetic disease affects his motor neurons. Brandon is missing the gene that produces protein to protect his nerves, leaving his nerves to deteriorate and die, causing paralysis, Martin said.

The muscle tone in Brandon's legs is gone, so he can't support himself, Martin said. Brandon is still able to crawl and stand up on his knees, but he can't have an active lifestyle like other 4-year-olds, Martin said.

The procedure

Stem cell injections are being used on a wide range of problems from cancer to diabetes, Martin said.

"They're all different things, but for whatever reason, they're helping," he said.

The treatment includes four injections mixed with intensive physical therapy for 21 days.

The generic stem cells are taken from umbilical cord blood, Martin said. When the stem cells are injected into the body, they migrate to wherever the problem is and program themselves to do whatever the body is missing, he said.

Any improvements are mostly instantaneous, though gradual improvements can occur from four to six weeks later, he said.

The procedure is not available in the United States. Martin originally found a place in Mexico that performs the injections, but later heard about China, which he said has been performing it longer and has more documented results.

There is no cure for Brandon's disorder, but other patients are proving the stem cell injections stop the progression, Martin said.

"I have my hopes set really high that he'll be able to walk off the plane," Martin said.

But the family realizes the treatment provides no guarantees.

"The only guarantee we really have is the doctor said (they've) never had a patient come in who left worse off as before," he said.

The family has tried experimental drugs on Brandon, but they didn't notice any changes, Martin said.

"It's the only chance, from our standpoint," Martin said. "It's the only chance he has, so it's like, let's give it a shot and see what happens."

Fund raising

The treatment costs $20,000.

"That's kind of the battle we've been finding," Martin said.

The family cleared out everything it didn't need for a rummage sale last year. When people started hearing about Martin's efforts, they donated more, and the rummage sales continued.

He jokes now that he has twice as much stuff as when he started the sales.

But the trip to China isn't the family's only expense. Brandon's grandparents—Martin and Sharon Vaughan—raise him and his brother and sister in their Janesville home, where modifications are needed for Brandon's wheelchair. Martin has already built a ramp outside, but he's planning improvements to the bathroom while the family is in China.

"We're doing a little bit at a time, where we can afford it," he said.

"We appreciate everything everyone's been doing."

IF YOU GO

What: Rummage sale to raise money to send 4-year-old Brandon Meinke to China for stem cell implants

Where: 144 Valley Drive, Janesville

When: 8 a.m. to 5 p.m. today through Sunday

Also: The family also is accepting donations at the sale