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Erik and Jennifer Fair and their son, Alex, who is 10 years-old, on the couch in the Fair family room. Alez is soothed by touching so both his parents take turns.

Rare disease bonds families

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COTTAGE GROVE, Minn. -- Jennifer Fair said she tells her 10-year-old son that she loves him and that he is "my perfect boy."

She sees Alex, not the disease that will eventually take his life.


Most nights, Alex has trouble staying asleep. When he's having a bad night, Erik, does what most fathers will never have to do. He sleeps next to son's bed and when Alex tries to get up, Eric puts Alex's leg back into the bed and goes back to sleep.

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Judy Spooner
Judy Spooner is the longest-serving staff writer at the South Washington County Bulletin. Spooner, who covers education and features in addition to writing a weekly column, has been with the newspaper for over 30 years.
(651) 459-7600