Here's a pretty picture, before we get into the hard stuff. Ventnor Beach, just over the border from Atlantic City, where my sister has a home. I took it a couple years ago, played with it in PhotoShop, and probably overdid the effects.
The disease that affects the characters in my latest book, "In Search of Helen from Two Locks," is known as ALSP. I can't say with absolute certainty that this is the disease that killed Helen and Patsy, because neither of them had their DNA tested. It wasn't till about 2012 that they discovered the gene that causes the disease, and now the test is routine.
Something I didn't emphasize in the book, although I knew it, was that if you're the child of a parent with the disease, you have a 50% chance of inheriting the mutation. Patsy was Helen's 7th child. Were the other six all lucky? Also, Helen was the seventh child in her family. Again, it seems that her siblings were unaffected. Were they all lucky, too?
Here's a family that is suffering the full brunt of the thing. They are not lucky at all.