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.

Know someone who should read this story? Share it

0 comments

Login or register to leave a comment


Sandhoff Disease treatments

What are the best treatments for Sandhoff Disease?

What is Sandhoff Disease

What is Sandhoff Disease

Sandhoff Disease advice

Which advice would you give to someone who has just been diagnosed wit...

Living with Sandhoff Disease

Living with Sandhoff Disease. How to live with Sandhoff Disease?

Sandhoff Disease prognosis

Sandhoff Disease prognosis

Sandhoff Disease symptoms

Which are the symptoms of Sandhoff Disease?

History of Sandhoff Disease

What is the history of Sandhoff Disease?

Sandhoff Disease diagnosis

How is Sandhoff Disease diagnosed?