Diagnosed with Tay-Sachs

Lisa and Sebastian Robaut’s 3 year old son, Nathan, was diagnosed with juvenile Tay-Sachs two weeks ago. Tay-Sachs is an extremely rare and fatal genetic disease. Due to the genetic nature of the disease, Lisa and Sebastian’s 4-month old baby, Dillon, was also tested. Despite the odds, Lisa and Sebastian received the unimaginable news today that Dillon also has juvenile Tay-Sachs. Although there is currently no known cure for Tay-Sachs, Lisa and Sebastian are exploring all of their treatment options including umbilical cord blood transplants currently being performed at Duke University as well as potential gene therapy and stem cell transplants being performed outside the United States. In addition to the enormous emotional burden that Lisa and Sebastian are facing, treating and caring for two children with Tay-Sachs will certainly involve a tremendous financial burden. We are currently exploring setting up a charitable organization dedicated to assisting families dealing with Tay-Sachs where tax deductible donations may be made and hope to have more information on this in the next couple of days.