ALS For support and discussion of Amyotrophic lateral sclerosis (ALS), also referred to as "Lou Gehrig's Disease." In memory of BobbyB.


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Old 04-02-2007, 06:43 AM #1
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BobbyB BobbyB is offline
In Remembrance
 
Join Date: Aug 2006
Location: North Carolina
Posts: 4,609
15 yr Member
BobbyB BobbyB is offline
In Remembrance
BobbyB's Avatar
 
Join Date: Aug 2006
Location: North Carolina
Posts: 4,609
15 yr Member
Default He waits for medicine to catch up

He waits for medicine to catch up


He waits

for medicine

to catch up

Different kinds of urgency sent them across the globe, in search of a dose of medical hope.

Brooke Barels' trip to China was an attempt to improve her life. The 9-year-old and her mom, Vicki, are due to return to their home west of Burlington today after a month of treatment attempting to speed up Brooke's development. She was born with a genetic mutation that's kept her from speaking clearly and walking on her own.

Their quest is getting national attention. NBC news crews often accompanied them during their stay in Hangzhou.

Brooke's treatment included a series of spinal injections of stem cells (taken from umbilical cord blood, not like the more controversial kinds). It'll likely be a while before they can fully evaluate, but Vicki's posts to Brooke's Weblog did seem hopeful.

"She's still coming up with more and more sounds and is repeating a LOT. We have to watch out!" one of the entries read.

The family's travel plans rang a bell with my readers, who wanted to know how Kevin Granger was doing. About 2 1/2 years ago the Caledonia man went to China, too, trying to prolong his life.

Although his procedure didn't technically involve stem cells, it was no more available in the U.S. than the one Brooke just went through. The cells Granger received came from noses of already-aborted Chinese babies, which only stirred the debate.

Back then I wrote about his gamble on a treatment to curtail the ALS (aka Lou Gehrig's disease) that was slowly shutting off his body functions. We finally connected a few weeks ago, and he's the focus of today's updates column.

Granger said his journey quickly went sour. Of the 15 people he met in China undergoing similar procedures, he said, only one is still alive.

Until the last week of his stay, he was stuck in a "really backwards" Beijing hospital. He told the story of watching staff futilely try to revive a friend of his for an hour and a half, then take off for 20 minutes before starting again.

I asked if he was sorry he went, considering the expense and the things he saw. No, he said, "You have to try."

The disease has advanced somewhat since we last talked. His speech is a bit more slurred. He can still stand, with help. He can move the computer mouse.

The 47-year-old Granger zipped past the odds, which before his trip in 2004 pointed to a couple of years at best. Help came from other unofficial sources. Diagnosed with Lyme disease, he's taken an antibiotic for that the last couple of years. Also entering clinical trials as an ALS treatment, the drug might be slowing the disease's push.

Plus, a pacemaker in his diaphragm works to keep his breathing muscles strong.

"I consider myself very lucky to still be hanging around," Granger said.

Will his illness outrun the cautious pace of government approval? He's not thinking that way. Not with graduation ceremonies on the horizon for the rest of his four children. Not with a 13-year-old daughter to walk down the aisle someday.

"I'm not giving up," he said. "Something will happen. There'll be a breakthrough. It may not be in this country, but when there is and when it does, I'll be there."

Mike Moore can be reached at (262) 631-1724 or mike.moore@lee.net
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