How COVID Really Affected Rare Disease Families

By Jess Curran, Duchenne Mom & Advocate

We all hear about COVID in the news, but what does it really mean for families living with rare diseases? Jess Curran shares her deeply personal story of living through the pandemic with her immunocompromised son, Conner, who has Duchenne muscular dystrophy (DMD).

Living with Constant Fear

“With an immunocompromised son, how could we not be terrified of COVID entering our home? For two long years, we did everything possible to protect him. We homeschooled our kids, avoided crowds, and stayed cautious—even after vaccines became available.

Having our children vaccinated was a huge relief, easing some of the overwhelming worry about what might happen if any of us caught COVID. But the fear never completely left.

Conner’s condition means his body is already fighting hard every day. His heart and lungs work overtime, so any virus—especially one known to harm these organs—is a serious threat."

When COVID Finally Arrived

“We made it almost two years without infection—then it hit us over the holidays. I fell ill first, and despite our best efforts, Conner tested positive just before returning to school. His first symptom was a simple stuffy nose.

We immediately contacted our doctor, who advised close monitoring. Thankfully, Conner’s symptoms remained mild: a low-grade fever, sore throat, and slight cold.

He was able to get his booster shot soon after testing negative again. We believe his luck was due to having both vaccine doses and catching Omicron rather than earlier, more dangerous variants.”

The Challenge of Understanding

“One of the hardest parts of this journey was facing the lack of understanding from others. It’s difficult to explain why we must remain so cautious when so many have moved on. People don’t realize what it’s like to love someone immunocompromised during a deadly pandemic.

There are many misconceptions, especially about children and COVID. While most kids fare well, this simply isn’t true for immunocompromised children like Conner.

Many people will never truly grasp our situation unless they live it themselves. Hearing complaints about mask-wearing or hearing COVID being dismissed is incredibly painful.”

Balancing Caution and Calm

“At first, we struggled with how to talk to our children. We wanted to stress the importance of safety without causing unnecessary fear.

Finding that balance was tough—we had to protect them physically while keeping their spirits strong. It’s a constant challenge to manage our own anxieties while nurturing their resilience.”

Final Thoughts

Jess’s story is a powerful reminder that behind every statistic are families facing unique battles—fear, hope, and unwavering love.

Her experience highlights the importance of empathy and understanding as we continue navigating the pandemic’s ongoing challenges.