Sanfilippo Syndrome prognosis

Sanfilippo Syndrome is a progressive, regressive disorder. It is a roller coaster ride that you cannot get off. Children born with Sanfilippo Syndrome go through cycles in their lives. They start out so full of spunk and energy, literally bouncing off of your walls....eventually they will lose those skills and the need to be helped full time for even the smallest things becomes your norm. You can still be happy within this insane life, you just have to let go of what you thought your life, or your child's life was "supposed" to be. Live what you were given, love the life you have, and make the best of every single second. With Sanfilippo you just never know when that kiss will be the last one. Take advantage. Live, love, and breathe

Currently the diagnosis is still terminal

Sadly the prognosis for Sanfilippo syndrome is progressive with no know cure.