Story about Sandhoff Disease .

Harper Ruth

Sep 28, 2016


My sweet daughter, Harper, was diagnosed at 11 months with this horrible disease.  She never sat up, rolled over, or spoke.  She was heaven sent, a true angel of God.  She had trouble eating/swallowing right away and we opted for the g-tube in January of 2015.

After multiple visits to the hospital and three week-long stays, we took her home on hospice care in August of 2015.  Off and on of oxygen, with multiple treatments at home, her sweet tiny body gave up on January 2, 2016.  8 days shy of her 2nd birthday.

She touched so many lives with her angelic sweet spirit and we miss her everyday.  Too pure, too lovely, to live on earth.

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