Entertainment
Rockstar couple detail daughter’s rare disease after ‘clumsiness’ symptom-Kitty Chrisp-Entertainment – Metro
Only 70 people worldwide have it.
Portugal. The Man rockers John Gourley and Zoe Manville have opened up about their 12-year-old daughter’s rare condition (Picture: YouTube/Portugal. The Man)
John Gourley and Zoe Manville have opened up about their 12-year-old daughter’s horrific degenerative condition.
The couple are bandmates in popular rock band Portugal. The Man, and they have been fundraising and raising awareness for the genetic disorder, which only affects a known 70 individuals worldwide.
They first noticed signs of their daughter Frances’ health condition when she was being homeschooled in 2021 during the pandemic.
‘She just seemed to kind of deteriorate,’ Zoe, 39, told the TODAY. ‘Then she started to fall down a lot, which at the time I didn’t know if it was her just being clumsy.’
‘Doctors said it’s like Parkinson’s, Alzheimer’s and dementia in kids, it’s neurodegenerative,’ John, 42, added. ‘That’s probably the scariest thing you can hear as a parent.’
‘It’s pretty crushing and devastating,’ Zoe continued, explaining how doctors don’t know what’s going to happen or how fast, because so little is known about the disease.
Doctors told them that like Parkinson’s, Alzheimer’s and dementia, the condition is neurodegenerative (Picture: YouTube/Portugal. The Man)
The pair described the diagnosis as crushing, but there is hope (Picture: YouTube/Portugal. The Man)
Symptoms include tremors, coordination issues, seizures – which can look as like falling asleep for a few seconds – learning difficulties and more.
Frances is a ‘little comedian,’ according to her parents. ‘She’s very funny and loving.’
She’s even got on stage with them before, and she even appears in one song on their new album, after on hearing the lyric, she couldn’t stop singing it.
Treatment will cost the parents $2million (Picture: YouTube/Portugal. The Man)
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.
Personalised medication is required, and costs up to $2million.
There’s no treatment currently in place, so the hopeful parents are attempting to develop it themselves with fundraising via GoFundMe for the mammoth cost.
The parents also hope to use the money raised to support research toward finding a cure for DHDDS.
‘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,’ explained John.
‘There are some success stories out there,’ he added. ‘That’s a huge hope for everybody.’
Got a story?
If you’ve got a celebrity story, video or pictures get in touch with the Metro.co.uk entertainment team by emailing us celebtips@metro.co.uk, calling 020 3615 2145 or by visiting our Submit Stuff page – we’d love to hear from you.
MORE : I have stage 4 cancer, can’t work, or afford to even buy toilet roll
Entertainment – MetroRead More
