Stories of Sandhoff Disease

STORY
Sandhoff Disease stories
Hi! My name is Ludwig and I´m from Sweden. I was diagnosed summer 2015. I have bad balance, I fall much, I walk but sometimes I use a wheelchair.
Sandhoff Disease stories
My daughter Zoe was diagnosed Sandhoff at 12 months and now She is 16 months Old. She is beautiful and We love her so much... Next week We will do g tube to feed her and give meds..I hate this thing, but it is necessary. I hope researchers will find...
Sandhoff Disease stories
My Daughter Gen is 17 months old. She was born 7/2014 and was diagnosed at 8 months old. She showed delayed milestones  and poor muscle tone. What we initially got her checked out for was nystagmus, an eye condition.  But they wanted to do ...
Sandhoff Disease stories
My daughter Rebecca was diagnosed with Sandhoff disease in 2005 when she was 10 months old.  Sadly she lost her fight in August 2008, 8 weeks after her baby brother came into the world. 
Sandhoff Disease stories
My daughter was diagnosed with Sandhoff Disease in April 2013 at 12 months old.  She passed away in October 2015 at 3 1/2.  Feel free to contact me with any questions in managing this disorder.  

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Statistics of Sandhoff Disease

0 people with Sandhoff Disease have taken the SF36 survey. Mean of Sandhoff Disease is 0 points (0 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey

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