Garland, TX — As 11-year-old Jace prepares for his next procedure, the community is coming together to show their support for this remarkable young boy. Jace, who lives with a rare disease known as sacral agenesis, has faced numerous medical challenges in his short life. He continues to demonstrate strength and positivity in the face of his ongoing battles.
Jace’s mother, Angelina Carrier, shared his story with the Gazette in the hope of encouraging her son and raising awareness about this rare disease. Despite undergoing countless procedures, Jace remains vivacious and upbeat, often spotted with a beloved snake plushie, a token that helps him navigate through tough times. “He’s our little miracle child,” Angelina said as she recounted his story.
Sacral agenesis, also known as Caudal Regression Syndrome (CRS), is a condition that impacts the development of the lower spine and can affect bladder and bowel function. For Jace, this has meant an extensive medical history since birth, filled with specialized care and numerous surgeries, including the upcoming cecostomy procedure aimed at improving his quality of life and ideally reducing anxiety about frequent hospital admissions.
Angelina recalled some of the early struggles they faced, from difficulty with feeding and allergies, including Jace being allergic to breast milk, requiring an expensive specialized formula for his nutrition, to the cranial surgery he underwent as an infant. Although he has had significant challenges, Jace has blossomed into a bright fifth grader, excelling academically in math and science. He recently received a gold award, an academic achievement that he accomplished even after missing many school days due to medical issues.
Jace not only excels in his studies but is also an active participant in gymnastics, where he demonstrates his athleticism despite missing several vertebrae in his lower spine. He has limited mobility at times due to back pain, but manages to overcome obstacles with grace. “He uses a wheelchair for long distances, but other than that, he’s very active,” Angelina noted proudly.
In addition to his academic and athletic pursuits, Jace is also a patient ambassador for Children’s Hospital, where he shares his experiences and inspires others. His charisma and bravery have made him well-loved, not just by family but also by medical staff who often recognize him at appointments. Jace is never shy to talk about his journey, embracing his identity with openness and courage.
As the date of his surgery draws closer, Jace has expressed anxiety but has also found comfort in the support of his family and the community. Angelina detailed how they have been preparing for the surgery, ensuring that their home is a calm and welcoming environment for Jace’s recovery. “We want to bring him home to recover in a stress-free environment,” she explained.
The family has also initiated a meal train to help with logistics during Jace’s recovery, which has received a warm response from neighbors and friends. “We are so grateful for the people who have helped us so far with donations,” Angelina stated on social media, thanking the community for their generosity and support.
Jace’s older brother, Anson, 13, has been supportive. In an effort to support both of their growing boys, the family has been intentional about giving extra love and attention to both boys. During Jace’s extended hospital stays, Anson stays home with his dad while his mom and brother focus on recovery. Although this situation can be challenging for siblings, Anson handles it with remarkable maturity.
As Jace prepares for his next procedure, the community continues to rally around him, sending well-wishes and support. The support from neighbors, friends, and local businesses will undoubtedly accompany him as he continues to shine his light on everyone around him.
