Who is in your family?*
My big family includes my dog, Cupcake, my dad, my bonus mom, two sisters, two bonus sisters, cousins and a host of nieces and nephews. We are all very close. My mom definitely watches over us in spirit.
What do you want people to know about your family?
I am a 32-year-old adult with CHARGE syndrome who has lived independently with my dog Cupcake since October 2020. I currently work as a school nurse at Sunshine Children’s Home and Rehab Center, a pediatric long-term care facility serving medically complex children, and I hold a bachelor’s degree in Public Health from Monroe University. CHARGE syndrome has always impacted—and will continue to impact—my health and daily functioning, requiring ongoing self-advocacy and support. As a child, I had a tracheostomy and a G-tube and experienced multiple surgeries and hospitalizations. I was born with a coloboma and am totally blind in my right eye, and I have vocal cord paralysis that resulted in a speech impairment. Despite this, I live a full, fun and active adult life and drive independently everywhere there is a road. These lived experiences have given me a deep understanding of the challenges individuals with CHARGE face across healthcare, education, and adulthood. My family has always believed in my ability to live a full and meaningful life; no matter what any prognosis said. I was taught to be proud of my culture and never to hide my disability. They supported me through medical and life challenges while also encouraging independence, confidence, and self-advocacy, which has shaped who I am today.
Why do you volunteer with the Foundation?
I volunteer with the CHARGE Syndrome Foundation because lived experience matters, especially within complex systems like those in New York. As an adult with CHARGE syndrome, I understand how isolating it can be when individuals and families are navigating healthcare, education, and state services—particularly during the transition into adulthood. It is a natural passion of mine to connect people with resources that help them better understand their options, elevate themselves from their individual situations, and move forward. Through this work, I aim to elevate adult voices and help ensure that the individuals and families with CHARGE are supported as whole people with full lives, goals, and futures.
What activities do you/your family like to do?
I enjoy watching documentaries and traveling whenever possible. I like tapping into my inner architect by building LEGO sets and organizing my home, which helps me think and reset. I enjoy embracing femininity and creativity through fashion, makeup, skincare, and unapologetically boosting the economy by shopping. I love spending time with my sisters, cousins, and my two best friends, Briana and Madeline, as well as going to museums, festivals, concerts, restaurants, fairs, and pop-up events. At home, I’m usually relaxing with my dog Cupcake—my constant shadow and the apple of my eye since 2014.
To contact your state’s Family Liaison, or if you are interested in becoming a Family Liaison, please email [email protected].
