John Gourley and Zoe Manville — members of the hit band Portugal. The Man — open the story of their 12-year-old daughter’s rare genetic disorder.
The couple spoke with TODAY about first noticing signs of their daughter Frances’ health in 2021 while she was being homeschooled during the pandemic.
“She just seemed to get worse,” Manville, 39, told the newspaper. “That’s when she started falling down a lot, and then I didn’t know if she was just clumsy or not.”
Four years later, Frances was diagnosed with the rare genetic disease DHDDS, which is a neurodegenerative disease. According to Cure DHDDS, there are only 70 known cases worldwide. Symptoms include tremors, coordination problems, seizures, learning difficulties, and more.
“It’s like Parkinson’s, Alzheimer’s and dementia in children,” explained Gourley, 42. “That’s probably the scariest thing you can hear as a parent.”
“It’s pretty crushing and devastating,” Manville added.
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Gourley and Manville describe their daughter as “funny and loving” with a personality that is “infectious”. They added that it was extremely difficult to see Frances having 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 quickly it’s going to happen,” Manville told the outlet.
Gourley said there are some children with DHDDS who have shown cognitive improvement and “that gives us a lot of hope.”
Frances has since undergone $2 million worth of personalized medicine, and a GoFundMe has been created to help with treatment costs. The parents also hope to use the money raised to support research into a cure for DHDDS.
“There are some success stories,” Manville said. “It’s a great hope for everyone.”
Categories: Trends
Source: HIS Education