Eliza's story is helping other kids like her.
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
The family is incredibly thankful to the thousands of strangers to have donated to their GoFundMe page, but they're only
But, it doesn't have to. There is a Gene Therapy trial that might take place at Nationwide Children's Hospital in Ohio at
The O'Neills are heartbroken, but hopeful. Though, as Cara notes, they need action more than hope. Nationwide Children's