James was born full-term but spent two months in the Neonatal Intensive Care Unit (NICU), after a worrisome birth. James experienced a stroke during the first trimester of gestation. Due to neurological orders related to this incidence, James does not have the ability to suck, swallow or cough. When he was a few months old, James had a feeding tube placed. After his first birthday, he was diagnosed with Quadriplegic Cerebral Palsy, a condition that impairs movement of all four of his limbs. James relies solely on enteral nutrition (tube feeding). After a long journey of trying different formulas and diets, in 2016 James was introduced to Peptamen® Junior 1.5, and it remains his sole source of nutrition today.
Getting a feeding tube is never an easy choice, but James’ family was quick to embrace the feeding tube. “It was almost like a no-brainer to get a feeding tube. It was the best thing for us and him. It is truly his lifeline. Not many can say that they can eat while sleeping!” says James’ mom, Stacey. James is a beautiful young man who enjoys going to school and spending time with his family.
During the COVID-19 pandemic, James had to adapt to many changes, such as remote schooling and decreased physical movement/physical therapy, which ultimately began impacting his health. “The lack of movement really messed with his GI tract. We had to slow down the feeding time because he was becoming lethargic. He even missed a few meals because he was just not digesting the formula; he [was not] moving it through due to sitting in his wheelchair and doing online learning for hours,” comments Stacey.
Being at high risk for COVID-19, James’ family had to take extra precautions during the early phases of the pandemic. Even though schools eventually reopened, James remained at home, where physical therapy online learning took place. In the fall of 2022, James was able to go back to the classroom with his peers!! He enjoyed seeing, listening, and learning next to his peers for his last year in the district!
In 2019 James’ mom shared a photo of James on his Facebook Page-Fans of James to generate awareness for those with physical and cognitive disabilities. The caption under the photo was, “Don’t stare, say hello,” It went viral for the wrong reasons. People began to make hurtful memes related to the photo and re-post them in the comment section of the page. His family and friends were beside themselves that there were people that would go so far to hurt a young boy who was just trying to share a simple message. Shortly after these memes started to appear, a reporter contacted James’ parents and published an inspirational story in a large urban newspaper about James and his family. This led to a major news station contacting the family and interviewing James, his mom, and his nurse at his school. His school and community gathered to support James! What was initially a negative incident, ultimately turned into a positive one. The family’s message of awareness and support of those with physical and cognitive disabilities has reached millions of people worldwide and is still shared to this day!
James and family, thank you for sharing your hopeful story and continually raising awareness about families managing physical and cognitive disabilities. Thank you for sharing your Peptamen® journey with others.
James is part of the Nestlé Health Science Patient Connections Program where patients share their stories to inspire and remind us why we do what we do -- provide valuable, complete nutrition to the patients we serve. In appreciation for a patient’s participation, Nestlé Health Science makes a donation to a nonprofit organization in the patient’s honor of his/her choosing. Prior to COVID, live programs were conducted at a Nestlé Health Science facility and patients received reimbursement for travel, lodging and food.
