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Whitestown teen raises awareness of rare condition through art, YouTube

Isaac Stark is living with a rare chromosomal abnormality that his doctors have never seen before.

WHITESTOWN, Ind. — 13-year-old Isaac Stark, a student, artist and YouTuber, wants people to find their artistic side, hoping it promotes awareness about his rare medical condition. 

“These are the colors I am going to use, orange, green, yellow and like a darkish purple,” Isaac says in one of his latest videos on “Isaac’s Art Studio,” his YouTube channel. 

In the videos, the Whitestown middle schooler encourages people living with sensory issues to paint and create, just like he does. 

Isaac is living with a rare chromosomal abnormality that his family says his doctors have never seen before.

“The doctors have told me there’s no other person that they’ve identified or documented with his particular chromosomal issue, so the doctors are learning more from him than we’re learning from the doctors,” Isaac’s mom Trish explained. 

Among the challenges that come with Isaac’s condition are severe sensory issues that put him on the autism spectrum. Isaac is also immunocompromised, which makes in-school learning next to impossible. He tried, but it didn’t go well. 

“He wasn’t playing at recess. He wasn't going to PE. He wasn’t doing all those things. He was just going to his classroom and he was constantly sick,” Trish said. 

For the past three years, Isaac has attended classes online with the Indiana Digital Learning School. 

Then there’s the mitochondrial disease with which Isaac was born, which affects his development. 

“The particular mitochondrial disease he has causes deafness. He can hear right now, but they said he could wake up one morning, even into adulthood, he could wake up one morning and be deaf,” said Trish. “So, we’re praying that doesn’t happen, of course."

It’s a lot to handle, but the biggest hurdles right now are the ones that have sometimes appeared literally overnight. 

“Wake up in the morning and he can’t read or he can’t do math anymore,” said Trish. It's happened on three different occasions in Isaac’s young life. “When he was really young, he lost the ability to eat several times.” 

“He can’t walk more than three minutes without his legs starting to collapse, basically,” said Trish. 

“Luckily, I haven’t lost my ability to read or do anything else in a long time and thank goodness, just because I’ve lost the ability to do it once before or many times over, I feel like relearning it is just part of my life now,” Isaac said. 

And so is his YouTube channel and online store on Etsy called “Isaacs Art Studio 1,” where he is selling his works, hoping to promote awareness of what it’s like to live with a rare condition and the issues that come with it. 

“And that’s pretty much what you could say about my painting, I just work with what I got,” said Isaac. 

“He’s always wanting to help everybody, and now he’s getting to help the doctors learn more about this issue,” said Trish. 

Isaac takes it one day at a time, come what may. He’s determined that whatever happens, he’ll face that challenge and just keep going. 

“I just don’t think about it. If it happens, it happens and I’ll deal with it and until then, I don’t really have to worry about that and everything’s just fine,” Isaac said.

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