Hi, My Name Is
Zander
AGE:
8
Years Old.
Motto:
“One step at a time”
Diagnosis:
NOD2 genetic mutation, EOE, autoinflammatory disease, specific antibody deficiency
High School Team:
Dream Team:
CapitolCity BMX
Favorite Things:
BMX bikes, BMX racing. Color-Red & Black
Zander was born at 31 weeks and demonstrated remarkable resilience from the start. We enjoyed ten months of relative health with Zander until he began experiencing severe vomiting and difficulty swallowing. This led to significant weight loss and a diagnosis of failure to thrive. Zander was soon diagnosed with eosinophilic esophagitis (EOE).
In early 2018, Zander required a gastrostomy tube (g-tube) due to the inability to manage his condition through other means. Even with the g-tube and various dietary modifications, achieving remission remained elusive. Over the past seven years, we have discovered that Zander is allergic to all foods. Remission is only possible if he follows an elemental formula diet.
In the fall of 2019, Zander began experiencing severe left knee pain, which
disrupted his sleep. By January 2020, he developed a cyclical fever and rash. This marked the beginning of our journey with autoinflammatory disease. Zander was also referred to the National Institutes of Health (NIH), where comprehensive genome testing revealed a homozygous NOD2 mutation. While this mutation is rare and its exact impact is uncertain, it is believed to influence his body's responses.