An Interview With Seda Filenko As one of the first families dosed with gene therapy, what were some of your thoughts, feelings, hopes, fears, anything you really considered as you made the decision to enroll in the trial? The idea…

It was May of 2020. What started off as a virus we were observing from the US wreak havoc first in Asia, then Europe, was now firmly taking hold locally. The two-week home school period, turned into two months and families were thrown into the impossible transition of figuring out how to work from our living rooms and support our kids’ education through endless Zoom meetings and classes. Life as we knew it was on hold…seemingly endlessly…and many were crippled with fear of the toll COVID-19 could have on us and the world we live in. But something was about to disrupt our lives in a far more meaningful and personal and terrifying way than any global pandemic ever could. 

We’re all familiar with what the news is saying about COVID and its effect, but how does it really affect rare disease patients and their families? We asked Jess Curran and Karen Morales to share the experiences they had when COVID made its way to their families.