Bartlesville Mother Creates Characters To Comfort Son Battling Rare Disorder

A Bartlesville mother’s mission changed when her son was diagnosed with a rare disorder.

A mother's love for her child can be a powerful force. Reading to them, calming them, and protecting them.

Madi Coolbaugh is a mother of two boys. Calloway is her youngest.

“Calloway, he is one and a half, and he is so sweet,” Coolbaugh said.

Although she's done everything to keep her sons safe, she couldn't stop the rare genetic disorder Calloway was born with-- Tuberous Sclerosis-- his body can’t regulate cell growth, so benign tumors grow.

"The life you have planned for your child, you all of a sudden, you have no idea what's going to happen,” Coolbaugh said.

Calloway spent the first year of his life traveling to the Le Bonheur Children’s Hospital in Memphis every six weeks for testing and treatment for the tumors and seizures he was experiencing.

Each visit, he had to have leads glued to his head for an EEG.

"After a couple of days, he had welts all over, and there's really nothing that you can do about it at the moment. You just have to help them fight through it,” Coolbaugh said.

To help Calloway fight, Coolbaugh came up with an idea to make those long hospital trips a little happier.

"Happy Stay started kind of as an accident,” Coolbaugh said.

She created a cap made of bamboo fabric in bright, different colors and patterns to soothe the discomfort from the leads being hooked up to his head. 

That inspired another idea. She created two storybook characters, Eddie and Evie, to experience the same things Calloway does.

"I think it's taught me that even in a really challenging time, you can still find the happiness in it,” Coolbaugh said. “As weird as it sounds, I think I have found my purpose through his diagnosis."

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