Living with chronic granulomatous disease as a mom

When my son Sebastian was born on May 1, 2012, everything seemed perfect. We brought him home on May 3, and we celebrated by having "A New Big Sister Party" for our daughter who was almost four. It was also my birthday, and I had just been given the most precious gift: our beautiful baby boy. I felt so happy for our daughter especially. She overflowed with pride and love for her new baby brother. I look back on pictures of that day, and her smile is one of the biggest and truest that I've ever captured.

All was well for the first couple of months. Then, Sebastian developed a prolonged fever, followed by two infections that required stays in the hospital. While doctors assured us that "these things can happen" and “not to worry,” my husband and I felt that a second opinion was warranted. (Think Zebra!)

We saw an immunologist at Weill Cornell/New York Presbyterian Hospital who ran some tests. Nothing could have prepared us for what happened next. She called us into her office and gave us the news: Sebastian had chronic granulomatous disease (CGD). As many of you can relate, my life changed that day. I had never heard of the condition before, but at that moment, I began "living with CGD."

Thankfully, our immunologist recommended that we get in touch with IDF. I called the number that she gave me, and a representative immediately put me in touch with a fellow mom in the CGD community named Barbara. I will never forget the sound of her calm and friendly voice, as she talked about life with her son. He was in college now, she said. Things were pretty “normal.”

After speaking with Barbara, I immediately had hope.

Since then, apart from a few hospitalizations for minor infections, things have been pretty “normal” for us as well. While we remain cautious, Sebastian is like most rambunctious two-year-old boys; he is always “on the go.” He loves to play soccer, go on train rides, swim, and tear around the house with his big sister. He also enjoys making healthy smoothies each day for breakfast. He’s quite adept at putting blueberries in the blender. He’s even better at showing off his purple smoothie mustache for the camera, as you can see.

This is all to reinforce what many of you know: children with CGD have immune systems that are almost "perfect," and the medications available today can help fill the gaps. As a result, patients of all ages can lead healthy and productive lives.

However, we also understand that the long-term future is uncertain. While we treasure each moment that we have, we must be mindful of tomorrow. That is why this site is so important to increase awareness, education, support, and a sense of “being connected” to the CGD community. Although CGD is a rare condition, we are not alone.

Thank you,

Felicia