The Vivians | Patient Spotlight

About Becky, Eli and Ella Vivian

In 2012, Steven and Becky Vivian learned their youngest two children, Eli and Ella, were diagnosed with a rare and fatal genetic disorder called Metachromatic Leukodystrophy (MLD). The disease, according to the MLD Foundation, causes a degeneration in the white matter of the brain and the central nervous system, resulting in a degradation of a person’s ability to function, as well as the onset, in some cases, of paralysis, blindness, seizures and eventually death.

Doctors told them there was no cure or treatment, but through a Facebook connection they learned about a gene therapy clinical trial being performed in Milan, Italy. Eli and Ella became the 10th and 11th children in the world to undergo this treatment with Dr. Alessandra Biffi. The Vivians’ hope is to bring awareness to MLD, how it can be prevented, found early, and hopefully be treated with gene therapy in the United States.