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Clarksville boy raises awareness for rare eye disease

Sean Smole, 6, wears his Superman cape as he swings under the family deck with his sister Sydney, 4,.
Sean Smole, 6, wears his Superman cape as he swings under the family deck with his sister Sydney, 4,.(Photo by Nate Pesce, Baltimore Sun Media Group)

In a lot of ways, Clarksville resident and Pointers Run Elementary School student Sean Smole is your typical 6-year-old boy.

He likes to play on his parents' iPad; he'll try to sneak an extra cookie after dinner, and he loves Legos.

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Sean is also one-in-a-million. Literally. Sean suffers from Coats disease, a rare eye disorder that often develops in children and can cause blindness or even loss of an eye. He's one of less than 200,000 Americans affected by the disease, according to CoatsDiseaseFoundation.org. His mother, Barbi, said, because she has a cousin whose son also suffers from Coats, the chances of Sean also developing it were actually one-in-a-million.

"I turned white as a sheet," Barbi Smole said recalling when she found out last December. "As soon as [the doctor] said Coats I was devastated because I knew what my cousin went through. I knew the multiple surgeries they went to save his son's eye, and I was sad that my son had to deal with this."

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When Sean was diagnosed last December, he was completely blind in his right eye. In the nine months since, he's had seven surgeries on his eye, with the last one on Sept. 16. Now he has 20/80 vision in his right eye, progress that Barbi and Sean's father, Kevin, said is a testament to their son's perseverance and the doctors at The Wilmer Eye Institute at the Johns Hopkins University School of Medicine.

They hope the September surgery was Sean's last, but even if it is, the Smole family is far from done with Coats disease. The family, with the help of the Wilmer Eye Institute, will be hosting a fundraiser this month aimed at bringing awareness and raising money for research, both of which Barbi said are very low.

"Nobody knows about Coats disease" she said, "and the research dollars, they don't go to rare childhood eye diseases."

On Saturday, Oct. 11 from 2 to 3 p.m., Barbi Smole will lead a Pilates Mat Class at Ballet Royale Institute of Maryland located at 9147 Red Branch Road in Columbia. The class is open to the public, and there will be a raffle and other ways to donate to the cause. Later that evening, the Smoles are hosting a fundraiser at their home in Clarksville, which will include a silent auction.

All funds collected from the events will go to the Wilmer Eye Institute's Coats Disease Research Fund.

According to CoatsDiseaseFoundation.org, Coats disease occurs when blood vessels behind the retina of the eye break open, leaking into the eye and causing impaired vision. The leakage leads to partial or complete detachment of the retina, which can cause blindness if not treated quickly enough. According to the site, 69 percent of all occurrences happen in boys, and the average age range for diagnosis is between ages 8 and 16.

The onset of Coats disease can be sudden, and a lot of the damage done is irreversible.

"You don't wait with Coats disease," Kevin Smole said.

The fundraiser started as an awareness campaign for parents to get their children's eyes checked for Coats and other rare diseases.

"There's all these other crazy eye diseases with children that, if you get your kid checked when they are young, they can be reversed or cured," Barbi Smole said. "It originally started as: Let's just get the word out there for parents to take their kids to get their eyes checked. And if we get one person to get their kid's eyes checked – success."

Barbi Smole said the event quickly evolved into something else: a way to pay it forward for future kids that develop Coats disease.

"The whole idea that maybe in 10 years, the money that we raised now is going to help a kid avoid seven surgeries," she said.

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"We know we aren't going to see immediate results from the money we raise," Kevin Smole said. "We know it's not going to benefit Sean, but that's OK. It's an opportunity to create the event and create awareness, and who knows where it goes from there?"

The fundraiser also has raised Sean's spirits. His parents say Sean is hesitant to talk about his surgeries, but that he lights up when the fundraiser is mentioned.

"Anything with the fundraiser he is excited about," Barbi Smole said.

For more information on Coats disease, the fundraisers and how to donate visit curingcoats.blogspot.com.

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