A Memorial Playgound in Honor of Sebastian

My name is Kip Botirius. My wife Kelly and I just lost our amazing 4-year-old son Sebastian. He was a shining light for the world, and we loved him with every bit of our beings. Anyone who ever met Sebastian will tell you that he was a special, smart, lovable little boy who, in his short life, made the world a better place. My wife, our 6-year-old son Jackson, and I would like to continue with his legacy.

Sebastian passed away on Monday, April 18, 2022, due to complications after a bone marrow transplant done in spring 2021 to help address a rare genetic disorder called LRBA Deficiency.

There were many things that Sebastian loved. Kitty cats, dinosaurs, his brother Jackson, the color green - and PLAYGROUNDS. Unfortunately, because of his condition and the recovery from a bone marrow transplant, he wasn't able to visit many playgrounds. Still, he had big plans to visit so many when he was better! We want his legacy of happiness and love to live on forever. So we (with some help from the city of Solon) want to build a new community playground for every child to enjoy forever! We want to dedicate the playground in honor of Sebastian and all the kids around the world that struggle with rare diseases with little to no research and/or cures. Every dollar donated to Sebastian's Memorial Fund will be used to build this brand-new, all-inclusive, fun playground for children.

Background on LRBA Deficiency (lipopolysaccharide-reactive and beige-like anchor protein): this is a rare genetic disorder that causes fatal autoimmune diseases. There are just a few hundred people living in the world with LRBA Deficiency.

Sebastian was diagnosed with Type 1 Diabetes (T1D) after going into DKA when he was just six months old. Because of the rarity of T1D as an infant, additional genetic testing showed that Sebastian was missing his pair of LRBA genes, and it is believed that it is what caused his T1D. Because he developed his first autoimmune disease at such a young age, the experts we found believed that he would be hit hard and fast with the other incurable autoimmune diseases that LRBA Deficiency causes. He had a very short expected lifespan if LRBA Deficiency wasn't "treated" with its only cure - a bone marrow transplant (BMT), giving him an entirely new immune system.

The BMT journey was a tough one, and he had many unexpected setbacks. We tried everything we could, but in the end it was too much for our sweet angel's body. We know he will forever live on in our hearts and memories, but we want to ensure the world doesn't forget Sebastian.