Hello Friends,

My name is Thomas James Price, and I just celebrated my first birthday on September 29! While it’s been a challenging first year filled with hospital stays and surgeries, I’m a strong, resilient little boy who keeps fighting with a smile.

A little about my journey:

I’m a medically complex child diagnosed with a SIX2 deletion, which is associated with idiopathic intracranial pressure, frontonasal dysplasia, ptosis, and conductive hearing loss. My medical journey has also included Pierre-Robin Sequence (for which I underwent mandibular distraction surgery), mild to moderate obstructive sleep apnea, hydrocephalus caused by anomalous venous drainage, and chronic reflux with aspiration.

Most recently, I underwent neurosurgery (ETV/CPC) to address my severe and worsening intracranial pressure. Since birth, I’ve endured four extended hospital admissions between Boston Children’s Hospital (BCH) and Albany Medical Center, each requiring intensive care and ongoing treatment. I’m currently inpatient at BCH’s Pediatric Intermediate Medical Care Unit (PIMCU) receiving care from an incredible team of doctors and nurses.

Despite everything, I continue to amaze my family with my strength, spirit, and smile. My parents are endlessly proud of their little fighter — and we are deeply grateful for every bit of love, support, prayer, and share that helps us continue providing the care I need.

How your support can help:

Our family has been doing everything possible to stay by Thomas’s side and make sure he receives the specialized care he needs. However, his ongoing treatment and lengthy hospital stays have created significant financial challenges — from travel and lodging near Boston Children’s Hospital to uncovered medical expenses, medical supplies, and maintaining basic necessities such as our mortgage, food, utilities, and insurance.

Your support will help us focus fully on Thomas’s recovery without the added stress of these costs. Every contribution, no matter the size, helps us stay together as a family and give Thomas the best chance to keep healing, growing, and smiling.

While we never envisioned being in this situation, from the bottom of our hearts, thank you for standing with us on this journey — your kindness truly means the world.

With heartfelt thanks,

Thomas James Price & Family