December 20th 2023.
John Gourley and Zoe Manville, bandmates of popular rock band Portugal. The Man, have recently spoken out about their 12-year-old daughter Frances' rare and degenerative condition.
The couple first noticed signs of her condition during the pandemic when she was being homeschooled in 2021. Zoe, 39, told the TODAY, “She just seemed to kind of deteriorate. Then she started to fall down a lot, which at the time I didn’t know if it was her just being clumsy.”
John, 42, added, “Doctors said it’s like Parkinson’s, Alzheimer’s and dementia in kids, it’s neurodegenerative. That’s probably the scariest thing you can hear as a parent.” Zoe continued, “It’s pretty crushing and devastating.” The disorder is so rare that it affects only a known 70 individuals worldwide and doctors don't know what's going to happen or how fast due to the lack of knowledge.
Symptoms of the condition include tremors, coordination issues, seizures, learning difficulties and more. Despite this, Frances is a "little comedian" according to her parents. She has even taken to the stage with them and even appears in one of their new album's songs after she couldn't stop singing it.
The couple have set up a GoFundMe to try and develop a treatment for Frances, which will cost up to $2million. The song ‘Times a Fantasy’ ends with the line ‘I’ve got a feeling things are going to be just fine,’ which Frances recorded for the track. The money raised will also be used to support research for a cure for the disorder.
John said, “There’s examples of kids in front of us who have had cognitive improvements with these treatments, and that gives us a lot of hope. There are some success stories out there. That’s a huge hope for everybody.”
The couple hope that by speaking out about their daughter's condition, they can raise awareness and ultimately help her and the other 70 individuals suffering from the same condition.
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