Against All Odds, Young Boy Shines Brightly
Six-year-old Shine Arslanian has encountered challenges that would shake the confidence of many adults, yet his determination remains.
In an interview with CBS News, Jamie Duby, Shine’s mother, said she draws inspiration from him daily as he continues exceeding her expectations.
Her baby’s diagnosis blindsided Duby on September 16, 2017, the day Shine was born. He was rushed into emergency surgery at UC Davis Children’s Hospital. Spending three weeks in the UC Davis NICU, Shine was diagnosed with a rare combination of genetic conditions: Bartsocas-Papas type, Popliteal Pterygium Syndrome (PPS), and Ectodermal Dysplasia—a condition Dr. Suma Shankar, genomic medicine chief at UC Davis Health, described as exceedingly rare.
Shankar was present during Shine’s birth to assess the noticeable genetic abnormalities that marked the beginning of Shine’s extraordinary journey. With only one finger on each hand, webbed legs, immobile knees, and a cleft palate, Shine’s arrival was fraught with challenges. Yet, his resilience was evident from the start.
Enduring 17 surgeries at just six years old—with more on the horizon—Duby attributes their family’s perseverance to the unwavering support received at UC Davis Children’s Hospital. Duby shared with CBS News that the hospital’s staff listens attentively and takes her concerns seriously.
Amputating to improve mobility
Shine’s journey to improved mobility involved the amputation of his webbed legs, granting him the ability to walk with prosthetics. But Shine’s aspirations extend beyond walking; he runs. As soon as he was strapped into his first pair of running blades, Shine embraced the exhilaration of running and hasn’t looked back since.
His inclination to run is symbolic, as Shine’s life is akin to a marathon—a journey marked by endurance rather than speed. Despite losing his legs, he’s gained a spirit that knows no bounds.
Shine dreams of competing as a Paralympic athlete. His daily routine includes a mile-long run home from the bus stop. According to Duby, Shine times himself down the driveway and always tries to improve.
However, Shine’s pursuits are not limited to running. He also dabbles in swimming and fencing. He is involved with organizations like the Challenged Athletes Foundation as he tries to transcend his physical limitations continually.
Beyond his personal triumphs, Shine’s eagerness to educate others about his rare conditions is equally inspiring. Duby recalled a touching moment when Shine addressed his classmates, inviting their curiosity and fostering understanding. Duby remarked that it was a “powerful moment.” At a tender age, he already knows how to advocate for himself— “a skill that will serve him for life,” Duby said.
Shine’s story is a testament to the resilience of the human spirit—a reminder that our differences unite rather than divide us. Duby encourages parents to embrace curiosity and foster understanding rather than shun inquiries about differences.
Dr. Shankar also stressed the importance of shedding light on rare genetic conditions, advocating for awareness and acceptance.
Shine is preparing for his next pair of prosthetic legs at Shriner’s Hospital for Children in Sacramento, and Duby is committed to nurturing his potential. “He chose me as his mother, and I’ll ensure he thrives—because Shine was born to shine,” she told CBS News.
