From Deseret News archives:

Generations of tears

Published: Wednesday, July 12, 2006 12:13 p.m. MDT
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Danny's not sure how he feels about either of those. But he knows he doesn't want to pass on the disease to another generation. And it comforts him to know that his options for treatment and hope seem to be growing every day.

The disease and the future are not something he readily discusses. His friends know, "I'm pretty sure," but they don't dwell on it. "We're too busy water skiing and working and getting ready for school in the fall."

His own plans are not solid yet. He'll stay close to home to help his family care for John and Julie and Amy. He'll probably attend Salt Lake Community College. He works days as a landscaper, then goes out with a gang of friends.

"I don't really know what's in my head or heart," he confesses. "As real as it is, for me it still seems fake. It's prepared me and matured me a lot.

"I don't think I'm in denial. But I'm healthy. So it's hard to relate to it.

"It's in my family, and I'm dealing with it that way but as if I didn't have the gene. And whether I have the mutation or not, either way, I have to be to work at 7:30 a.m."

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It bothers him that what has happened to his dad and to his sisters could happen yet again to Rebecca or Craig or Trevor or Andrew or Hannah. At the same time, when people say they have to find a cure for the kids, it strikes him that he and Julie and Amy were the kids their folks worried about. And on back through the generations.

He wants to see a cure. But he also desperately wants to see effective treatments for those who already have the disease.

"Please. We can't just forget about Dad, Amy and Julie."

· · · · ·

Research breakthroughs have come in dribs and drabs for those who'd like to cure Huntington's. The discovery of the marker in late 1983 was the first really big one. Then, a few years later, location of the actual gene and the advent of genetic testing.

This year has been a good one for Huntington's research.

Recently, the most exciting discovery was that it may be possible to repair the brain. For centuries, the brain was thought to be unchangeable and unrepairable. That notion's being tested and turned upside down.

Some studies involve the use of brain cell transplants to send stem cells in to interrogate and repair cells that have been damaged. It's too early to tell if it will have a dramatic impact for people with Huntington's. But scientists believe the stem cells have an extraordinary, most likely chemical, way of communicating. It boils down to this: When they get to a damaged cell, they ask it if it's OK. And they make healthy copies to repair those that aren't.

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