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Thursday, July 7, 2011

Putting things into perspective

I am going to the funeral home tonight for the visitation of a little six year old girl who passed away on Independence Day.   She had Pompe Disease, which is a terminal illness. 

This is the caption in an April newspaper article about Addison:

Addison Berner, 6, of Anna, with her parents Tony (left) and Kelly Berner, wave to well wishers as they go down Anna's Main Street Saturday in a parade that was part of “A Rainbow of Love Day” which is a celebration of Addison Berner’s sixth birthday. Addison and her parents traveled from their home in Anna to the Village Salon owned by Kelly in Botkins. Addison was diagnosed with terminal Pompe disease and her parents consider her time on Earth a miracle. Addison can discern colors and she loves a day out to see bright colors that many take for granted. Parade spectators donned bright fluorescent T-shirts along the way, part of the Team Addison support group.

The Berners are wonderful people.  At the left edge of the picture, you can see another girl in a wheelchair.  That is their older daughter, Abigail, who has Cerebral Palsy.  Blake went to preschool with Abigail and loves toplay with her at an occasional Parent's Night Out.  They also have a son who is older than Abigail and another daughter who is the youngest.


I am so saddened by the passing of Addison.  I did some reading about Pompe Disease, and most babies who are diagnosed with it never live past their first birthday.  Addison's life really was a miracle. 

1 comments:

kim c said...

thanks for posting! What a great picture, and what an inspiring family!