As you would expect, four-year-old identical twin brothers, Owen and Easton Jouppi, of St. Francis, Minnesota, have a lot in common.
They enjoy going to preschool and learning new things with their friends; and as soon as they’re home, they want to run outside and play in the backyard. The twins also share a passion for trains. On special days, they get to visit their Dad, Mike, at work, where he works as a supervisor for a major railroad company. They both can barely contain their excitement when they’re able to watch those big freight trains rumble down the tracks; and they find it equally difficult to leave when their Mom, Nicole, announces that it’s time to go home.
In addition to all these things that Owen and Easton have in common, they share something that is very rare: Chronic Granulomatous Disease (CGD). After dealing with recurring perirectal abscesses and inexplicable weight-loss, the boys were diagnosed with CGD one week before their first birthday.
“At first, we did not know what to expect,” said Nicole. “We were really afraid for our boys.”
Their doctors at Children’s Hospitals and Clinics of Minnesota prescribed Owen and Easton Bactrim and Sporonox. They also recommended interferon gamma, and Nicole learned how to give the boys shots subcutaneously three times a week.
Like many parents with CGD, Nicole’s life changed dramatically after the boys were diagnosed. Nicole had previously been working full-time while her parents watched the twins. However, she soon decided to stay at home in order to focus more fully on the boys’ care.
She also became committed to learning everything she could about CGD. She researched the disease, talked to specialists, and looked for answers. In addition, she and her husband attended the IDF 2013 National Conference in Baltimore. She described the experience as invaluable because it enabled her to learn the latest information regarding CGD as well the opportunity to connect with other parents whose children have this type of primary immunodeficiency.
“Having kids with CGD can feel isolating because it is so rare,” said Nicole. “It was great to meet other parents who understood what we’re going through.”
Thanks to taking their medications and avoiding the usual risks for patients with CGD, like playing in the dirt or jumping in piles or leaves – life is pretty normal for the boys these days, she said.
“The boys are healthy,” said Nicole. “In fact, they miss fewer days of preschool than the other kids in their class. It has been pretty amazing.”
Indeed, Owen and Easton are doing so well, that their doctors have invited Nicole and Mike to meet other parents in the area whose children have been newly diagnosed with CGD. It is something that they’re happy to do, she said.
“I know how devastating it can be to get that diagnosis,” said Nicole. “But I want to show others that it is possible to live with CGD. The boys have had their challenges, but they’re getting through them.”
Thank you to Nicole and her family for sharing their story! You can meet others living with CGD at the IDF 2015 National Conference in New Orleans, June 25-27. There will be a special symposium for individuals and families living with CGD. Healthcare professionals will present the latest information regarding CGD during sessions held Thursday afternoon and Friday morning, and participants can attend general sessions Friday afternoon and Saturday.
CGD Scholarships to the IDF 2015 National Conference are available. To apply for a scholarship, e-mail firstname.lastname@example.org. To view the agenda, go to: www.idfnationalconference.org/cgd-session. We look forward to seeing you in New Orleans!