Family brings 'Frozen'-themed school dance to living room for daughter battling rare condition

Published February 23, 2015

The O'Neill family recreated a school's Frozen-themed Valentine's Day dance for their daughter, Eliza, pictured with father Glenn.(Saving Eliza)

A South Carolina family who has been self-isolating for the past nine months due to their daughters rare condition brought the "Frozen"-themed Valentines Day school dance she was missing out on to their living room.

Eliza ONeill, 5, was diagnosed with Sanfilippo syndrome, type A, in 2013. Children with the disease lack an enzyme necessary for normal cellular function, which eventually causes a lethal buildup of a toxic material called heparin sulfate.

Patients eventually develop learning disabilities and behavior problems in addition to the pain and suffering that come with the diagnosis. Doctors told Elizas parents she will soon lose the ability to talk, walk and eat on her own.

Glenn and Cara ONeill, Elizas parents, decided to enter a self-imposed quarantine to protect Eliza from outside illnesses. They also dont want to risk Eliza building immunity to the AAV9 virus, which she will be given as part of a clinical trial they are anxiously awaiting to begin.

We have heard from other parents who have children with Sanfilippo that if their child gets sick at this critical age, it could accelerate their Sanfilippo symptoms, Cara, 40, told PEOPLE.

We think about how we are keeping our daughter at home during the days which could be the best she ever has, Glenn, 42, told the magazine. We cant take her to the zoo or the playground and she isnt in school with other kids.

The family also had to take Elizas older brother, 8-year-old Beckham, out of class.

I dont want her to have Sanfilippo anymore, he told PEOPLE. It messes up her brain and I want her brain to be normal.

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Family brings 'Frozen'-themed school dance to living room for daughter battling rare condition