Story about Sandhoff Disease .

Genevieve Elise

Jan 5, 2016

By: Denise


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 further testing. She is currently on o2 and has an ng-tube placed for continous feedings and medications. She lost a lot of her mobility at around 11 months and started to slowly decline to her position now of nearly immobile and completely dependent on us for everything. We have hope and know to cherish every moment with our munchkin. We love you Gen. We won't give up on you. 

Know someone who should read this story? Share it

0 comments

Login or register to leave a comment


Sandhoff Disease causes

Which are the causes of Sandhoff Disease?

Sandhoff Disease symptoms

Which are the symptoms of Sandhoff Disease?

Celebrities with Sandhoff Disease

Celebrities with Sandhoff Disease

Sandhoff Disease diagnosis

How is Sandhoff Disease diagnosed?

Sandhoff Disease sports

Is it advisable to do exercise when affected by Sandhoff Disease? Whic...

Sandhoff Disease jobs

Can people with Sandhoff Disease work? What kind of work can they perf...

Sandhoff Disease and depression

Sandhoff Disease and depression

ICD9 and ICD10 codes of Sandhoff Disease

ICD10 code of Sandhoff Disease and ICD9 code