We Believe Her Abilities are Delayed, Not Denied
Charles
State: Virginia
Congressional District:
Diseases
Genetic Disease
Issues and Challenges
Charles has encountered: Underserved Community
My Story
In February 2019, my wife and I were thrilled to learn we were expecting after three years of marriage. As military members, we opted for a first-trimester genetic test (CVS), which screens for genetic conditions. At 20 weeks, we were shocked to learn our baby had Prader-Willi Syndrome (PWS), a rare genetic disorder affecting growth, hunger, and development.
The diagnosis sent us through a whirlwind of emotions, but it also gave us time to prepare. Our daughter was born showing typical PWS traits, and we were ready to face the challenges ahead, knowing she was created in God's image. We formed “Team ARC,” connecting with specialists and support networks like PWSA|USA, doctors, and other families.
After 21 days in the NICU, our daughter came home with an NG tube and pulse oximeter, requiring constant monitoring for the first 8 months. She began various therapies and was later diagnosed with Autism and Scoliosis. Her daily routine includes therapy and preschool, where she’s making remarkable progress.
We believe her abilities are “delayed, not denied.” Our hope is for her to live a healthy, independent life, and this motivates me to be an advocate for PWS. I strive to raise awareness, push for research, and ensure equitable care and funding for rare diseases, especially PWS, regardless of ethnicity or race.
My Motivation and Inspiration
Our hope for our daughter to live a limitless, healthy and independent life in a world where she is hope to reach her goals and dreams. Also, the desire to ensure everyone living with a rare disease, especially PWS, has access to equitable care for regardless of their ethnicity or race.
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