Portugal. The Man Couple Detail Their Daughter’s Rare Neurodegenerative Disease: 'It’s Pretty Devastating'
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“It’s like Parkinson's, Alzheimers’ and dementia in kids. That’s probably the scariest thing you can hear as a parent,” said John Gourley, member of the hit band Portugal. The Man
Portugal. The Man/YouTube
Portugal. The Man's John Gourley and his 12-year-old daughter FrancesJohn Gourley and Zoe Manville — members of the hit band Portugal. The Man — are opening up about their 12-year-old daughter’s rare genetic disorder.
The couple spoke to TODAY about first noticing signs of their daughter Frances’ health condition in 2021 while she was being homeschooled during the pandemic.
“She just seemed to kind of deteriorate,” Manville, 39, told the outlet. “Then she started to fall down a lot, which at the time I didn’t know if it was her just being clumsy or not.”
Four years later, Frances was diagnosed with a rare genetic condition called DHDDS, which is a neurodegenerative disease. According to Cure DHDDS, there are only 70 known cases worldwide. Symptoms include tremors, coordination issues, seizures, learning difficulties and more.
“It’s like Parkinson's, Alzheimers’ and dementia in kids,” Gourley, 42, explained. “That’s probably the scariest thing you can hear as a parent.”
“It’s pretty crushing and devastating,” added Manville.
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Gourley and Manville both describe their daughter as “funny and loving” with a personality that’s “infectious.” They added that it was extremely difficult to see Frances experience seizures. And without a cure for DHDDS, the couple said, doctors have no answers for them.
“I feel like nobody knows what’s going to happen or how fast it’s going to happen,” Manville told the outlet.
Gourley said there are some children with DHDDS who have shown cognitive progress and “that gives us a lot of hope.”
Frances has since been undergoing a $2 million personalized medication and a GoFundMe was created in order to help with the cost of treatment. The parents also hope to use the money raised to support research toward finding a cure for DHDDS.
“There are some success stories out there,” Manville said. “That’s a huge hope for everybody.”
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