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.
On the Facebook page Kennedys HUGS, her dad posted on Wednesday of their last ride together in his pickup truck (“The Last Ride”), knowing that Kennedy’s journey on earth is nearing an end. Today’s entry acknowledges that Kennedy’s health is failing fast … already blind, she is dealing with continued loss of muscle strength.
In the midst of political squabbling, hearing about this family’s sad but courageous journey helped put the world back into perspective. (H/T Patricia Birdsall)
UPDATED 5/30/2014: Kennedy’s family posted on Facebook this morning that she had passed away during the night:
Kennedy Ann Hansen the Angel whom we all love so much slipped peacefully back into her Heavenly Fathers Arms at 2:47 a.m.May 30, 2014.
Read her dad’s entry with details of the final hours that Kennedy was with them. I’ll be keeping this family in my prayers as they continue their journey without Kennedy….