Documentary shares 11-year-old girl's fight with rare disorder

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One Palmetto family's story of perseverance and patience as their daughter navigates through a rare and fatal brain disorder is now being featured on the big screen. A local filmmaker decided the Humphrey family's journey was so compelling, it needed to be shared.

From the smile on 11-year-old Fiona Humphrey's face, you might not be able to tell that she is in the middle of a fight for her life.

"We're going to lose her eventually, but she's been happy the whole time," said Randy Humphrey, Fiona's father. 

Fiona has been diagnosed with Sanfilippo Syndrome, a rare and fatal disorder that attacks the brain. It's a disease that currently has no known cure.

"It's like the worst form of Alzheimer's you can think of in a child," said Humphrey. "They'll lose all the abilities they've already gained including their walking, their speech." 

For Fiona's parents, it's been a battle of their own. For much of Fiona's life, her mother has been bedridden due to severe kidney problems, and Fiona's father overcame a brain tumor just this past year.

"That shook the family I think more than anything, because everyone had to step in even more and they had already been doing a ton," explained Humphrey.

However, none of this has stopped the family from fighting for Fiona.

"We've been able to move forward a little bit more as a family," said Humphrey. "But it's getting a little worse, you can see that she's cognitively going away, you can see that she's losing a little more."

It's a journey and story that local filmmaker Thomas John Nudi wanted to capture in his new documentary 'Fiona Humphrey: A Family Album.'

"I think everyone could take a note from Randy and his entire family. It's not about shutting up but counting your blessings," said Nudi.

While nothing about Fiona's journey has been easy, her dad told FOX 13 that the small things make it all worth it.

"There's still the smiles and the giggles right along," said Humphrey.

But Fiona's life has taught her family the most important lesson of all.

"Enjoy the moments of everything you have in the moments they are here," said Humphrey.

To keep up with Fiona's journey, you can follow her Facebook page 'Fight for Fiona.' Any future showings of the new documentary will be posted on that page.