Kyrie’s Story
At just 14 weeks pregnant, Nicole and Garrick received news that would change their lives forever: their son had a rare birth defect called Gastroschisis. With this condition, a baby’s intestines — and sometimes other organs — develop outside the body through a hole in the abdominal wall, without a protective sac. On April 17, 2012, at Women & Infants Hospital in Providence, Rhode Island, Kyrie entered the world. What followed was a whirlwind of emotions as his parents held onto love, hope, and faith while their newborn son fought for his life. Just six days after birth, Kyrie underwent major surgery to remove a significant portion of his small intestine. He was diagnosed with Short Bowel Syndrome (SBS), a rare and life-threatening condition where the body can’t absorb nutrients, fluids, or electrolytes due to the shortened intestine. To survive, Kyrie became dependent on Total Parenteral Nutrition (TPN) and enteral feeds via a g-tube.
This diagnosis marked the beginning of a long and complex journey — filled with surgeries, medical setbacks, and moments of deep uncertainty — but also resilience, innovation, and immense love. Hasbro Children’s Hospital quickly became a second home, where Kyrie received life-saving care and was embraced by a team of healthcare professionals who understood the intricacies of his rare condition. Over the years, Kyrie reached milestones many take for granted. At three years old, he began to eat by mouth — an extraordinary achievement for a child with SBS.
Kyrie endured central line infections, g-tube revisions, rare complications like D-lactic acidosis, and countless hospital stays, yet through every challenge, his joyful spirit remained unshaken.
Kyrie’s progress continued as his parents discovered and developed a blend of real food they started at the age of three and when his medical team introduced the medication Gattex at the age of eight, which helped reduce his dependence on TPN and allowed his body to absorb more nutrients naturally. His story gained recognition when he was selected as a Children’s Miracle Network Champion Child, representing Rhode Island and raising awareness in Washington, DC for children with complex medical needs. At age eight, Kyrie’s original surgeon — who had been a steady presence since day one — retired. It was a deeply emotional transition, but also the start of a new chapter as Kyrie’s care moved to the Center for Advanced Intestinal Rehabilitation (CAIR) at Boston Children’s Hospital. There, he became part of a world-renowned, multidisciplinary team that continues to guide his journey with expertise, compassion, and a focus on long-term success and independence.
While medicine played a critical role in Kyrie’s story, so did the emotional and mental weight of living with a rare condition. For years, the family navigated complex systems and searched for community support beyond hospital walls. That changed three years ago when they discovered Rare New England (RNE). Although it came later in their journey, Nicole and Garrick quickly realized the impact an organization like RNE could have made from the very beginning. What makes RNE so special is that it supports all families in the rare disease space, regardless of diagnosis. Through education, advocacy, and connection, it creates a space where every rare story matters.
Now part of the RNE community, Nicole and Garrick are grateful to be involved and look forward to deepening their connection with the organization. They’ve found incredible value in the resources, events, and sense of community RNE offers — helping them feel seen, supported, and empowered.
In 2023, Kyrie’s central line was removed after eleven years — a milestone that symbolized not just medical progress, but the strength of a family and a village that stood beside them. Kyrie’s journey is lifelong but one of unwavering courage, medical miracles, and the power of connection. Though Rare New England joined their story later on, its role in their lives today is one they treasure — and they are excited to continue walking forward with such a passionate and inclusive advocate for the rare disease community.
Your support makes a world of difference in the lives of families like Kyrie’s. Consider supporting Rare New England today!