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.

*Main photograph of Sebastian is credited to Sarah Branaghan Photography*

About Us

Opening in Solon, November 2024!

Thanks to the generous donations and our sponsors, we are excited to announce the first Sebastian’s Playground will be opening later this year for kids of all ages and abilities to be able to enjoy. More information to come soon.

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, we 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 2024 Golf Outing

Saturday, October 19th 2024

Festivities Begin – 4:00pm

Glow in the Dark Golf starts at dusk

 

Barrington Golf Club

350 North Aurora Rd.

Aurora, OH 44202

 

Join us for an unforgettable day of family fun followed by an evening of glowing greens and bright swings at Sebastian’s Playgrounds Glow in the Dark Golf Outing! Held at the prestigious Barrington Golf Club, one of the finest courses in the area, this event offers a rare opportunity to play custom-designed par 3 holes that even the club’s members have never experienced before. Your sponsorship and participation will help us continue to build world-class playgrounds for kids of all ages and abilities.

All sponsorship packages include a variety of fun activities for the entire family including:

 

  • The World’s Largest Inflatables
  • Face Painting and Balloon Animals
  • Glow in the Dark Cotton Candy
  • Fantastic Food and Drinks
  • And much more!

Photos from Sebastian’s 2022 Golf Outing

Thank you to our Sponsors!

Title Sponsors

HD Growth Partners
White Glove Payroll

Glow Inflatable Sponsor

Yo Big Bounce

Glow Bar Beverage Sponsor

Stratus Advisors

Glow Golf Sponsor

Cle Limpieza Logo Final

Glow Bites Sponsor

capitaltape.com

Glow Zone Sponsors

solonfamilydental.com

William Hawke

Hole Sponsors

sparkhotels.com
GNR Concrete
Penchura
Winding River
Dromi Designs
Alliant Logo

Hammond Family

Ehlers Family

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