NewsSarasota, Manatee County


Local girl fighting extremely rare Sanfilippo Syndrome focus of new documentary

Posted at 6:52 PM, Sep 24, 2019
and last updated 2019-09-24 20:41:54-04

MANATEE COUNTY, Fla. — A Manatee County girl is fighting an extremely rare and terminal disease called Sanfilippo Syndrome and now a new documentary is featuring the challenges her family has faced in that fight.

Fiona Humphrey was a normal baby. Then developmental issues led to an autism diagnosis. At seven she kept falling and they knew something more was wrong.

"That was the day everything turned a little dark," said Randy Humphrey, Fiona's father.

Fiona was diagnosed with Sanfilippo Syndrome. It’s an extremely rare genetic disease with a life expectancy only 11-15 years.

"It's more of like Alzheimers in children. They learn all of their skills until about two or three years old and then go backwards from that point on," said Randy.

Fiona is now 11. Randy says it’s been challenging.

His wife Catriona suffers from an extremely rare kidney disease where she was nearly bedridden for six years.

Randy was working two full-time jobs to support his wife and four children and hardly sleeping so he could care for Fiona. Then he fell ill.

"I actually dropped, I had three seizures myself and they found a brain tumor in my head about the size of a golf ball," said Randy.

Filmmaker Thomas John Nudi originally set out to film a piece bringing awareness to Sanfilippo Syndrome until he saw the amazing optimism of the Humphreys despite all of their struggles.

"As much as this movie is about Sanfilipo Syndrome it’s about these people too. They are just incredibly good-hearted. They’re going through this right now and they’re just smiling all the time," said Nudi.

The documentary “Fiona Humphrey: A Family Album” will debut at the Rendezvous Film Festival in Amelia Island on Saturday, September 29.