sanfilippo syndrome

Having a child with a terminal illness and knowing their days are numbered will make you wish time would stand still.
During 3rd grade, we moved and Abby transferred to a new school. My biggest fear was starting over with a new set of teachers
Over time, I have learned that it is okay to be different and rare. Abby is a happy child, is well adjusted and does not even realize she is different. We are all different and we are all rare in our own way.
Four times per year. That is four more times that I am reminded of how different my daughter is from her peers. The thought of her academic differences is never far from my mind but the looming day brings it all back to the forefront.
You may never know how truly grateful we are for your decision to choose adoption for your unborn baby. There were other choices you could have made but you chose life and another family to raise your precious child. Our story is not the typical "thank you" for choosing life and for choosing our family.
Family time, as it is for many people, used to be limited to nights and weekends. We now get tons of time together, but our days like this are quite literally numbered. Each new day is a step backwards for my daughter.
My husband and I can't help but wonder if we're doing the right thing. Given the normal course and degenerative nature of Sanfilippo Syndrome, now is Eliza's best time to actually be able to do things out in the world. With our decision to not go out, we are taking those experiences away.
The disorder, which Eliza was diagnosed with in July of 2013, "makes the body unable to properly break down long chains of
For all of Abby's 9 years, I admit that I have been a very protective parent. Even before we knew she had special needs, let alone a terminal illness, I found myself trying to protect her from actual and perceived dangers.