Sutton Raye Simmons

Sutton came into our lives through IVF, and from the very beginning, she has shown incredible strength. Just two days after birth, she was transferred to a higher-level NICU, where she spent 40 days fighting to grow, thrive, and learn how to eat.

During her NICU stay, Sutton faced challenges with her breathing and feeding. She required oxygen support starting out with bubble CPAP and eventually weaned down to a nasal cannula, and an NG tube was placed to help her get the nutrition she needed. A swallow study later revealed that Sutton has silent aspirations, which meant she was unable to safely drink by mouth. Since then, she has also struggled with bottle aversions.

In addition to these challenges, Sutton was diagnosed with hypotonia, a feeding disorder, GERD (gastroesophageal reflux disease), and a cow’s milk protein allergy. We recently received her Whole Exome Sequencing (WES) genetic testing results, which revealed two variants of unknown significance. We’ll be meeting with her pediatric geneticist soon to discuss what this means and what additional testing may be needed to hopefully find an underlying diagnosis.

On June 30, Sutton underwent surgery for a G-tube placement along with a Nissen fundoplication to help reduce her severe reflux. Today, Sutton depends on:

Multiple daily G-tube feedings

Overnight continuous feeds with an Infinity pump

Medications given through her G-tube

Frequent suctioning and repositioning to prevent aspiration and manage reflux

She works hard in physical and feeding therapy several times each week, and her care is carefully managed by her pediatrician and a pediatric GI specialist. Because of her fragile condition, Sutton requires round-the-clock supervision and cannot attend daycare.

To provide the constant care Sutton needs, her dad has left his job to be her full-time caregiver, and our family is now living on a single income. At the same time, we are managing ongoing medical bills, copays, travel to frequent appointments, and many medical supplies that insurance does not cover.

Through it all, Sutton remains the happiest, sweetest baby. Her courage and resilience inspire everyone who meets her — she truly is small but mighty.

We are fundraising through Help Hope Live to help cover:

Out-of-pocket medical bills and therapy costs

G-tube supplies and specialized medical equipment

Travel for appointments and therapy sessions

Adaptive clothing and daily care essentials

Your support means the world to us. Whether it’s a donation, sharing Sutton’s story, or simply sending love and encouragement, every gesture helps us give Sutton the best care possible.

Thank you for standing with Sutton and our family.