When Mits Morales was 9 years old, he woke up from a 12-day coma to a diagnosis of Chronic Granulomatous Disease (CGD) and a life transformed. “At first, I found myself asking ‘why me?’ recalls Mits. “But I eventually came to realize I could either feel sorry for myself or continue with my life.” In the current era, the outlook for his CGD is more encouraging than it was 10 years ago. Now a young adult, Mits could easily choose to turn away from those memories but instead, he embraces his past so he can help other young people facing similar challenges. “When I was diagnosed in 2007, I didn’t know anyone else going through a comparable experience,” says Mits. “It can be a lonely time. I want to make sure that others have the support from those who have gone through it.”
As a volunteer member of the Immune Deficiency Foundation (IDF) Teen Council, Mits does just that, offering others something profound—understanding, support and hope. Transitioning from childhood to young adulthood is often marked by changes and challenges. It is a time of discovering what it means to be independent, exploring future educational paths, establishing relationships, and taking more responsibility for one’s health. As a Teen Council member, he attends various IDF events to help young people living with primary immunodeficiency diseases (PI) navigate those challenges. “IDF Teen Council members are a vital part of our organization,” says Jamie Sexton, IDF Government Relations Manager. “While the Teen Council was initially started to provide support to other teens, participants are branching out their involvement into other issues, like public policy and advocacy.”
Mits recently traveled to Washington, DC, to take part in IDF Advocacy Day, meeting with Congressional offices to advocate for healthcare issues that impact the PI community. His motivation to participate in Advocacy Day came about from his desire to give a voice to teens. He was inspired to help create awareness among legislators about the challenges of growing up with a PI. “Everyone should care about public policy because, even if you don’t realize it now, it affects you,” explains Mits. Jamie and Mits both agree that there are many inter-generational issues facing legislators these days. “Teens may be the faces of the future, but they have a voice today,” says Jamie who organizes IDF Advocacy Day. “It is vital that teens are represented and their stories heard.”
When asked about why he volunteers, Mits is quick to respond. “The diagnosis changed my life in ways that only those who have gone through it can fully understand,” he explains. “My favorite part of volunteering for IDF is knowing that my experience is helping others along their journey and making someone else’s life a little bit easier.”
To learn more about the IDF Teen Program, click here.
To check out the IDF Advocacy Center and see what issues are impacting the community, click here.
Interested in connecting with others living with CGD? Join us at IDF Retreats this summer. Click here to learn more.
This content should not be used as a substitute for professional medical advice. In all cases, patients and caregivers should consult their healthcare providers. Each patient’s condition and treatment are unique. The benefits and risks of any treatment should be discussed with the patient’s provider.