“The only option was for me to create our own miracle,” said Amber Freed. “Nobody else was going to help.”
first told doctors her baby boy wasn’t able to move his hands, they said that wasn’t possible.
“Then they look for themselves, and you can see from the look on their faces that they have never seen anything like this.”On June 14, 2018, at the Children's Hospital Colorado in Denver, Maxwell was diagnosed with a genetic disease called SLC6A1. The diagnosis explained why the infant hadn’t moved his hands or learned how to speak for the first year of his life, while Riley was thriving.
SLC6A1 is just one of thousands of untreatable rare diseases, and the perilous path it has set up for Freed, half science quarterback and half research fundraiser, is one that few parents can follow. “My dream is to create a playbook of how I did this for those that come after me,” said Freed. “I never want there to be another family that has suffered like this.
“At that moment, it was just vividly clear that the only option was for me to create our own miracle,” said Freed. “Nobody else was going to help.”“At that moment, it was just vividly clear that the only option was for me to create our own miracle. Nobody else was going to help.” of gene transfer by spinal injection, conducted in 5 to 10 children with mutations in a gene called GAN that causes swelling in brain cells., first tested in mice, attached a corrected version of the damaged gene to a harmless virus. Viruses reproduce by infecting cells and hijacking their DNA machinery to reproduce their own genes, making more viruses. The gene therapy virus in turn leaves behind a corrected gene in the DNA of cells they infect.
“It is the literal mouse version of him,” said Freed. “Testing a therapy in this mouse is as close as science can get to testing in my son directly.”first medical symposium “Amber is helping us to advance science, and everyone is making this a priority because of the young lives at stake — not just Maxwell, but other children this could help,” Kang told BuzzFeed News.
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