The daughter of Portugal. The Man’s singer has an incredibly, incredibly rare disease. He’s looking for help.
[A report from Elisa F.G.-AC]
This is not the kind of Father’s Day story you want to read. At the same time, it shows how far a father will go for one of his children.
Singer and guitarist for Portugal. The Man, John Gourley has a special Fathers Day request. This year he’s asking the world for help to save his little girl.
The Gourley family is hoping anyone and everyone around the globe will donate to their GoFundMe page to help save their 12-year-old daughter Francis, fight an extremely rare genetic mutation, one so rare that there are only six known cases around the world. There is also no cure, coverage or standard treatment.
Honouring the old man on Fathers Day is the classic choice but to those that have to spend it facing something like DHDDS, a salute is most appropriate.
“Due to the lack of data and people diagnosed with it, our only hope that has emerged so far is personalized medicine. We are yet to have confirmation that Frances is a viable candidate,” John Gourley wrote on GoFundMe. “Every day that goes by is a ticking clock. For the few people/kids diagnosed with DHDDS, desperately chasing researchers and scientists is a full time job.”
It costs up to $5 million for the only available viable option and no guarantees. Over $100,000 has been donated in just a few days, immense gratitude to all those who have helped thus far.
To view the GoFundMe, go here.
