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Sanfilippo Syndrome Eliza

We Quarantined Our Family To Protect Our Daughter -- Here's Why

Glenn O'Neill | Posted 12.30.2014 | Parents
Glenn O'Neill

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.

The Extreme Measures We're Taking To Try To Save Our Daughter's Life

Cara O'Neill | Posted 12.30.2014 | Parents
Cara O'Neill

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.

This Little Girl Wants You To #Sing2Lines Of Any Song In Order To Save Her Life

The Huffington Post | Jessica Samakow | Posted 08.19.2014 | Parents

In the video above, 4-year-old Eliza O’Neill sings two lines from the song "We are Young" by Fun. Eliza loves to sing, but if her parents don't rais...

How Perfect Strangers Might Save A 4-Year-Old's Life

The Huffington Post | Jessica Samakow | Posted 06.02.2014 | Parents

Glenn and Cara O'Neill are determined to save their 4-year-old daughter's life, but they can't do it alone. In the last two months, the O'Neills h...

After A Little Girl's Tragic Diagnosis, Her Parents Are Doing Everything They Can To Save Her

Posted 04.03.2014 | Parents

Eliza O’Neill seems like a typical 4-year-old. She loves Dora, the park, wrestling with her big brother, spelling her name, reading books and singin...