Big brothers are awesome.
They will harass and tease you because it brings them great joy, but you know they are in your corner if you need them.
Such is the case for little Emily Cepkauskas, a 4-year-old from Homer Glen, Illinois, who has Down syndrome and a congenital heart defect. And her big brother Tyler, who I’m sure loves to tease her when he gets the chance, misses her since she has to spend a lot of time in the hospital.
It was because of the amount of time she spent in the hospital that he decided to do something for her. Something that would help her remember him when he couldn’t be with her in person.
According to their mother, Laurie Cepkauskas, her little girl’s condition has meant her having to go through seven different surgeries and many months in the hospital.
“The longest stretch was four months,” the Chicago Tribune reports her saying.
Often times, Tyler wouldn’t be able to visit her, but he would be sure to send things to his sister, wanting her to know her big brother was thinking about her. Wanting her to remember what he smelled like. So it was normal for his mom to one of his stuffed animals or even his pillow when she left for the hospital.
This is typical behavior for Tyler since he and his little sister are best friends.
His mother tells WKRG5 News,
“Everything he does in life, he does with his sister on his heart. And it’s never just ‘Tyler.’ It’s always ‘Tyler and Emily.’ They are a package deal.”
Tyler has been looking out for his little sister right from the beginning, his mother explains.
“Tyler had to grow up a lot quicker than most kids. He was 2-and-a-half and had to adapt to being a special needs brother. The first three years of her life was being in and out of the ICU…”
While there were times he couldn’t visit with his sister, he was there when he could be. So he is very familiar with hospitals.
The Starlight Children’s Foundation’s Design a Hospital Gown Contest
When Cepkauskas learned of the competition put on by the Starlight Children’s Foundation, she knew she had to tell her son about it.
“Tyler loves to draw and create things, so he immediately jumped in and started drawing. The only thing he asked me was how to spell some words. And once he had that, he kind of took off.”
Tyler went about putting his love for his sister into the project. He drew inspiration from the things he would tell her.
His mother shares some encouraging words he repeated to Emily.
“These are words that he would always say to her. ‘Emily be brave and be strong. You are a fighter and I love you.’”
He knew he had a once in a lifetime chance to provide her with a reminder that while he couldn’t always be by her side in person, he would always be there in spirit. The words he chose for his design included, “brave,” “courage,” “hope,” “heart,” “fighter,” “survivor,” “strength” and “love.”
Tyler knows words are powerful. His mom has taught him that.
“I always teach Tyler that words are important. You can’t take back words. He understands that words impact.”
Tyler’s mom isn’t really that surprised he won.
“His design was completely designed from the ground up based on a 6-year-old’s heart. I think that’s what made his stand out was his personal connection,” she said.
Starlight CEO Adam Garone agrees.
“A big part of it is the story that sits alongside the design. When you the story is so great. When you have a sick child, the siblings are the ones who are as equally impacted. They’re on this journey as well.”
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