Film crew documents family's journey to find a cure for their daughter with rare disorder

Published: Mar. 29, 2014 at 1:50 PM EDT|Updated: Apr. 7, 2014 at 4:16 AM EDT
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COLUMBIA, SC (WIS) - A Columbia family's home looks more like a set straight out of reality TV.

For seven days, two videographers and a photographer have lived with the O'Neill family shooting video and taking photos every step of the way.

The houseguests are complete strangers willing to help this family in need.

Eliza O'Neill, 4, is dying of a rare terminal disease, Sanfilippo Syndrome Type-A.

We've shown you her parents' efforts to raise millions for a cure that's in development.

Those efforts have been kicked up a notch with the arrival of this team of artists willing to take Eliza's story worldwide.

Photographer Ben VonWong remembers when he received the email pleading for a photographer to help take Eliza's fight viral.

He was on a plane between Singapore and Australia when he read the message.

VonWong remembers reading the message saying.

"They need to raise money, they need a viral video and they need it now because time is of the essence. And, I thought about it. And, said I can probably do this," VonWong said.

Cara O'Neill, Eliza's mom, is grateful for VonWong's willingness to help.

"For them to give, totally stop everything they're doing and give their time, talents, and come here and try to make something special for us," Cara said.

For more information on Eliza's story, visit

For more information about Sanfillipo Syndrome, visit

Upcoming fundraising events in Columbia:

April 4:  6 p.m. to midnight, DANCE-A-THON, Ridgeview High School

May 14:  Golf Fore Eliza Outing, Oak Hills Golf Course

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