One anonymous guardian angel is ensuring that these two best friends with the same rare disease have a shot at surviving their sickness and being treated for their symptoms – no matter the cost.
Hereditary spastic paraplegia, also known as SPG47, is an ultra-rare neurodegenerative disease that causes microcephaly, seizures, and malformation of the brain.
When 4-year-olds Robbie Edwards and Molly Duffy met in person last year, they were the only two people in the United States – and the tenth and eleventh in the world – to be diagnosed with the incurable sickness.
As the tots happily played together, their parents, Chris and Kasey Edwards, and Kevin and Angela Duffy discussed how they could possibly save their daughters from the fate of the devastating disease.
While Robbie and Molly strengthened their friendship over the course of the last year, their parents initiated and funded two promising research options: drug screening at Boston Children’s Hospital and gene therapy at the University of Sheffield, UK.
Then, something amazing happened – an anonymous “angel donor” offered to match all of the nonprofit’s donations up to $100,000 until the end of January.
While millions are still needed to fund the research in full, a massive sum could be the financial push needed to advance proof-of-concept research and attain grant funding.
The parents’ nonprofit has started a GoFundMe to help raise the necessary funds for SPG47 research, and the page has already raised over $8,000. With the “angel donor’s” promise to double the earnings, that brings the tally up to $16,000.
This is great news for Robbie and Molly, as well as several other youngsters who were recently diagnosed with SPG47, because successful research could prevent SPG47 from taking away the physical and verbal milestones they work so hard to be able to achieve.
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