Portugal. The Man's John Gourley and his wife Zoe are looking to friends, family, and fans for help with their daughter Frances’ battle with DHDDS, a rare genetic mutation. As one of only six known cases in the world, the rarity of this disease unfortunately means that there are no medications nor insurance to help cover experimental treatments.
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Almost 12 years old now, Portugal. The Man singer John Gourley's daughter Frances' fight began when at the age of three, while in preschool, she was diagnosed with speech and other developmental delays, along with ADHD. "Recent evaluations show," the family says, "she is half her age developmentally, and via genetic testing we recently received a definitive diagnosis... Due to the lack of data and people diagnosed with [DHDDS], our only hope that has emerged so far is personalized medicine."
"Frances has changed our lives with her compassion and strength. We want to continue to see her laughing, singing, dancing, telling stories and jokes, giving hugs, and being her magical social self," they add. "Help us alleviate her physical and mental challenges that cause her so much frustration, anguish and pain... So far she already experiences seizures, hypotonia, ataxia, scoliosis, tremor, migraines, anxiety, frequent nausea and vomiting, photosensitivity, joint pain and muscle weakness. All a direct result of this disease. We live in fear daily that the worst is yet to come."
The Gourley family is currently accepting donations via GoFundMe from those able to help fund cures/treatment, different therapy avenues, and forward their goal in beginning to build a DHDDS community. "Any money raised beyond Frances' treatment," they add, will go "towards other research/families affected by this disease."
CLICK HERE for more information and to donate.
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