Bentley’s Story

Bentley was born in February 2024 at just 22 weeks and 2 days gestation, weighing only 1 pound 4 ounces. In the days after his birth, his weight dropped to just 14 ounces, and his fight for survival began immediately. Bentley developed severe bronchopulmonary dysplasia (BPD), a chronic lung disease common in extremely premature babies, requiring weeks on a high-frequency jet ventilator. Even now, Bentley depends on supplemental oxygen around the clock to breathe.

Bentley spent 176 days in the NICU before finally coming home in August 2024, but his medical challenges continued. He has retinopathy of prematurity (ROP) affecting his vision, vesicoureteral reflux (VUR) causing kidney reflux, and hypothyroidism, all of which require ongoing monitoring and treatment. Bentley also suffers from severe acid reflux, which led to the placement of a G-J tube to ensure he receives adequate nutrition safely.

On January 8, 2025, Bentley was transported back to the children’s hospital after being diagnosed with metapneumovirus. What followed was a 238-day PICU hospitalization, lasting until September 2, during which Bentley spent weeks intubated as his already fragile lungs struggled to recover. Imaging also revealed enlarged ventricles in his brain, though thankfully without current neurological side effects.

After extensive conversations with his medical team and facing an impossible decision, Bentley’s parents chose to move forward with a tracheostomy to give him the best chance at growth and stability. Bentley received his trach on February 12. Even with this support, his lungs continued to collapse, and Bentley developed osteoporosis and metabolic bone disease, making his bones extremely fragile. As a result, Bentley has suffered broken ribs and fractures in both upper arms—injuries no child should have to endure.

Bentley’s care is complex and truly 24/7. He requires constant monitoring, medical equipment, medications, frequent therapies, and endless specialist appointments. Because of the intensity of Bentley’s needs, his mom, Amanda, has been unable to return to work and is Bentley’s full-time caregiver, coordinating every aspect of his care.

The financial strain of this journey has been immense—hospital bills, travel, therapies, medications, and daily medical supplies add up quickly. This fundraiser was created not only to help ease those financial burdens, but also to show Bentley and his family that they are surrounded by love and support. These Bentley shirts represent strength, hope, and a community standing behind a little boy who continues to fight every single day.

Bentley has already endured more in his young life than most will face in a lifetime. Thank you for being part of his story and for helping carry this family forward.

T-Shirt Options

Option 1: Navigate with Hope

Option 2: Built on Strength

Option 3: Stronger Together Above the Tides

Please note the turnaround time for t-shirts will be 3-4 weeks.

Bentleys Fundraiser