Life in Colorado

MAXWELL’S STORY from his Mom, Amber

October 27, 2019

I have two year-old twins named Maxwell & Riley.  Like any parent, they are my world.  About a year ago, Maxwell, was diagnosed with a rare neurological disease called SLC6A1.  The disease is too rare to even have a formal name and is known only by the genetic location.  We were told nothing could be done and I chose not to accept that answer.  I called 200 scientists over the course of a month and found the disease can be cured via gene replacement therapy.  A world renowned scientist and I are working away to create this live saving therapy and we are hoping to advance a clinical trial next year that will cure every child with this disease.  I have raised $1,000,000 in 10 months to advance this therapy.