Meet Shari, jscreen Sr. Outreach Manager

When I gave birth to my first child, Evan, in August 1994, my husband Jeff and I were overjoyed. For the first six months, he grew and developed normally: a happy baby, always smiling and laughing. Like any parents, we dreamed of a bright future for him.

But over the next few months, we began to worry. Evan wasn’t reaching the same milestones as other children his age. While other children his age learned to sit, crawl, and interact, Evan could only watch. By ten months, we knew something was wrong.

After countless doctor visits and tests, we finally got an answer when an ophthalmologist found a “cherry-red” spot on Evan’s retina, a sign of Tay-Sachs disease. The diagnosis was devastating.

We learned Evan would likely not live to see his fifth birthday. As the disease progressed, Evan lost the ability to move, suffered frequent seizures, and eventually became blind and deaf. We cared for him at home, determined to fill his life with love. We took him everywhere—the park, the pool, the beach—surrounding him with as much joy as possible. Evan passed away just before he turned four and half.  No matter how much you try to prepare, there is no way to truly face the loss of a child.

Jeff and I have three more beautiful and healthy children who fill our lives with joy and give us the strength to carry on. Our other children have grown up helping Jeff and me honor Evan. Evan will always remain an important part of our lives.

Genetic testing coupled with genetic counseling is so important. It gives people the information they need to make informed decisions about their health. Before Evan,  I didn’t realize how crucial genetic counseling is to fully understand genetic testing  results. The jscreen mission isn't just something I believe in— it's a part of who I am. At every outreach event, I’m reminded why this work matters. Every person I speak with represents an opportunity to help inspire proactive choices, offer hope, and prevent tragedy.