SOLON, Ohio (WJW) – A grieving couple whose four year old son died earlier this week say they want to make sure that his name lives on.
That’s why they have launched a campaign called “Sebastian’s Playground.”
When Sebastian Botirius was born in 2017, his parents were elated that their son Jackson would have a little brother and their home in Solon was soon filled with laughter.
“We always say that he had a smile that just lit up his face and lit up the room. You always knew where you stood with him, for good or bad,” said Sebastian’s mother, Kelly Baylog.
The family’s joy turned to fear later that year when doctors discovered that Sebastian was diabetic and then over time determined that he had a rare genetic disorder.
His mother told us, “He has something called LRBA Deficiency. It turns out my husband and I are carriers so we are both missing one of each gene. Sebastian ended up not having either of those genes.”
Sebastian’s parents were overwhelmed when doctors told them the disorder causes fatal auto immune diseases, but there was a glimmer of hope.
“Really the only thing we could do was a bone marrow transplant which would essentially give him an entirely new immune system,” said his mother.
Unfortunately, after the transplant, Sebastian had a series of severe complications and despite his fighting spirit and will to live, he passed away on Monday.
He was four years old.
His father, Kip Botirius, told us, “People say all the time, words like heartbreaking and soul crushing and it’s beyond that.”
Sebastian’s mother added, “Beyond anything imaginable.”
As they grieve the loss of Sebastian, his parents have decided to pay tribute to their son by pouring their hearts into a GoFundMe campaign to establish a new community playground in Solon in Sebastian’s name.
“He loved playgrounds. It was one of the last things he said was he wanted to go play at a bunch of playgrounds,” said his father.
His mother added, “He would say ‘when I get healthy, Mama, Daddy, when I get healthy, this is what I want to do’ and so many of them were playgrounds.”
What is important to Sebastian’s parents is that the playground be accessible to children of all abilities and backgrounds.
The city of Solon is in the process of reorganizing its park system and the mayor of Solon has told the family he supports the campaign to create Sebastian’s playground.
“We’re going to build a playground that includes everyone, that is fun for everyone and brings smiles to everyone because that’s what Sebastian would want,” said Sebastian’s father.
Donations to support the playground project can be made on the GoFundMe page created by the family.