Since his birth on June 2, 2023, Gabriel Sebastian has been living at the Royal Hospital for Children and Young People in Edinburgh due to a rare and complex genetic condition, Spondyloepimetaphyseal Dysplasia. For 17 months, his parents, Teena Thomas and Sebastian Paul, have been by his side, transforming the hospital into a second home.
Born with a one-in-a-million condition that severely impacts his bone development, Gabriel’s life has been a blend of resilience and constant medical support. From his early days, doctors noticed his skeletal structure was underdeveloped, and he required immediate intensive care. A tracheostomy was performed early on, allowing him to breathe but leaving him unable to vocalize due to the placement of his breathing tube. The journey has been challenging, with countless emergencies and surgeries.
Despite the hardships, Gabriel has experienced small moments of joy. On his first birthday, he felt sunlight on his face for the first time—a treasured memory for his family. The hospital’s support, including accommodation provided by Ronald McDonald House Charities, has allowed Gabriel’s family to remain close, while Teena and Sebastian continue their careers as a scientist and an engineer, respectively.
As Christmas approaches, Gabriel’s family will remain in the hospital, but they have been invited to light up the hospital’s Christmas tree, a special moment to create lasting memories. The Edinburgh Children’s Hospital Charity has also rallied to make this holiday season bright for families like Gabriel’s who are unable to celebrate at home. Gabriel’s future remains uncertain, but his family’s strength and the NHS’s unwavering support continue to bring hope.
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