Sebastian Gray Botirius was born on November 20, 2017. He was an easy-going and happy infant. When he was six months old, he was diagnosed with Type 1 Diabetes (T1D), which is extremely rare for an infant. Subsequent genetic testing showed the T1D was caused by a rare genetic disorder called LRBA Deficiency. This disease causes a number of fatal autoimmune diseases, and he was given a short life expectancy. In hopes of combating this prognosis, Sebastian received a bone marrow transplant (BMT) in May 2021, when he was three years old. While the transplant was initially successful and Sebastian was seeming to get better, complications began to arise. His family and medical team did everything they could for him. Devastatingly, Sebastian passed away on Monday, April 18, 2022, due to complications from the BMT, at the age of four.
When describing who Sebastian is, it is hard to lead with how Sebastian died, because Sebastian is so much more than a genetic disease or his death. He LIVED! Sebastian should be remembered and celebrated, not for the fact that he died so young, but that he lived and blessed the world with his presence for just over four years.
Sebastian was a force to be reckoned with. He lived most of his life under the umbrella of medications, doctors’ appointments, insulin pump changes, and more, and yet he thrived. He woke with a smile on his face and a plan for what he was going to play with or do each day. There were days where he would wake amid a long hospital stay and announce, “it’s going to be a good day!” The coming day would include rounds of medications and so many specialists coming by, and yet Sebastian was focused on the good things that would be happening – playing with his family, art therapy, iPad time, and getting to visit the hospital fish tanks.
Sebastian’s hope for the future was powerful. He had an ongoing list of things he wanted to do when he was healthy (his own words). This list included things like going to his favorite playgrounds, eating strawberries, and visiting the beach. Sebastian loved his stuffie Black Kitty, his big brother Jackson, dinosaurs, the color green, StoryBots and Octonauts, cuddling with his Mama and Daddy, and exploring his backyard.
Sebastian is a special, smart, lovable little boy who, in his short life, made the world a better place. He brought smiles everywhere he went and touched many lives. Sebastian is deeply loved by those around him. Though his life was brief, Sebastian’s memory lives on and Sebastian’s Playgrounds will help ensure the world doesn’t forget him.
*Main photograph of Sebastian is credited to Sarah Branaghan Photography*
