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. 

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