Tag Archives: Kennedys Hugs

Perspective … a teen’s final days, a family’s courageous journey – UPDATED: The journey is over

By Lynn R. Mitchell

I took 25 minutes this morning and watched this video about a family in Utah that is facing the loss of their teenage daughter, Kennedy, who has terminal Juvenile Batten Disease. After five years of failing vision and unexplained muscle coordination issues, Kennedy’s family received the devastating diagnosis in June 2013 of this rare and always fatal disorder of the nervous system. Kennedy is the only case of Juvenile Batten Disease in the entire state of Utah.

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