Meet Sebastian

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.

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About Us

About Us

Sebastian’s Playgrounds was founded to honor Sebastian Botirius’ legacy of happiness and love so it can live on forever. First, with some help from the city of Solon, are going to build a new community playground in Solon for every child to enjoy! We want to dedicate the playground in honor of Sebastian and all the kids around the world who struggle with rare diseases. Every dollar donated to Sebastian’s Playgrounds will be used to build this inclusive and fun playground for children.

But we aren’t done there. We have developed a model for fundraising and building playgrounds. That, along with a wide variety of partners (fundraising, financial, playground developers, etc.), will help us build inclusive playgrounds for children in additional cities.

Sebastian's 2023 Golf Outing

Monday, September 11th 2023

Registration – 9:00am

 

Barrington Golf Club

350 North Aurora Rd.

Aurora, OH 44202

 

18 holes of Golf with cart, lunch at the turn and post-reception appetizers. Silent auction items and sponsorship opportunities available! Come alone, bring a friend, or your whole team – we’d love to see you at this year’s outing!

Register Now!

Photos from our 2022 Golf Outing

Share your Memories of Sebastian

Mallory

I will always remember Sebastian’s sweet, shy smile. It would light up his entire face! My favorite memory is when we went to get ice cream for dinner. Sebastian dove face first into his ice cream cone and we had to get a towel to clean him off afterwards. I think more made it on his body than in his mouth!

Nana

Sebastian is my grandson. He was such a sweet, funny, kind little boy. When I would walk into his house, he would come running to greet me, yelling “Nana, come play with me!” He would grab my hand and run with me to the playroom where he would have his cars or Paw Patrol set up and we would play. Sebastian loved playing my piano and it was usually his first stop when he came to my house. He was very creative at the piano, often using both hands and toes! He loved to read and one of my favorite memories is curling up to read with both Sebastian and his older brother Jackson. During one book that we read about no turtles in Antarctica, we were laughing so hard we could hardly finish the book. And then of course we had to read it over and over. I cherish the time that I had with him. He was such a special little boy and I miss him so very much.

Pavika

My fondest memory of Sebastian is at a karate field trip with SECPTA, even with all his struggles and pain he managed to keep up with all the kids while they ran laps around the gym. When he fell behind he never gave up, he was so happy to just be there. His perseverance and determination was truly inspirational to all.

Angie

Sebastian is our sweet and mighty neighbor, and thoughts of him make me smile. I have many fond memories of play at Sebastian and Jackson’s house. Sebastian was quick to share his toys, push Lenora in his ride-on car, offer her an applesauce pouch, and play with Lenora on his backyard playground. Sebastian is one of a kind, and we treasure the time we spent with him.

Aunt Becca

One of my favorite memories with Sebastian was teaching and reading with him about dinosaurs. He would always ask me what kind of dinosaur one of his toys was and sometimes I would search for the exact kind so that I could share with Sebastian something new. His face would light up with a huge smile when I told him and we would practice saying the names. I miss these little moments with Sebastian but I will always cherish my memories with him.

Emily

I’ll never forget working with Sebastian during one of his infusion appointments, and he expressed wanting a pet peacock. So of course in music therapy Sebastian and I wrote a song “I want a peacock” in hopes to persuade his mom and dad to get him one. It’s a song I’ll never forget, along with Sebastian’s creativity and playfulness.
Share your own Memories of Sebastian