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This NFL star’s godson has a relatively unknown disease. Now he’s fighting to change that. | The Latest Online

This NFL star’s godson has a relatively unknown disease. Now he’s fighting to change that.

My name is Olivier Vernon. You probably know me as an NFL player — but you should also know about another part of my life.

Yes, I’m a defensive end for the New York Giants and people are used to hearing me talk about football. But right now, I want to tell you about my godson, Jeremiah.

Jeremiah has Coats’ disease.

Never heard of it? Well, don’t feel bad. I hadn’t either, and you probably know about as much as I did before Jeremiah was diagnosed.

We didn’t even know he was sick at first.

But we did notice something unusual about pictures of him about four years ago.

Courtesy of Olivier Vernon’s Family/NFL My Cause My Cleats, used with permission.

Jeremiah was 2 years old at the time, and in all his pictures, one of his eyes reflected yellow.

His parents and I didn’t think anything was off about it, because we had no idea that it’s a common symptom of Coats’ disease.

But when the yellow reflection came up in conversation at a routine doctor visit, everything changed. The doctor said my godson had to go to the emergency room right away because he had symptoms of Coats’ disease.

A regular checkup one minute, rushing Jeremiah to the ER in the next — it was a shock.

At the hospital, we learned that he did indeed have Coats’ disease, a rare eye condition that progresses gradually and causes full or partial blindness.

Doctors still don’t know why a person gets Coats’ disease. They just know patients are born with abnormal development in blood vessels behind their retina.

The doctors also told us that Jeremiah could lose his eye, and that he needed surgery to save it.

That was mind-boggling to me — everything happened so quickly, and suddenly this disease we’d never heard of could take Jeremiah’s eye. I know it really affected his dad, too. As a parent, you want your kid to be as healthy as possible.

I remember going to the children’s hospital with Jeremiah, and he was so scared when they sedated him for surgery. When you see a little kid going through that, and think of the other families like ours, you know you have to do something.

The only big foundation for this condition is the Jack McGovern Coats Disease Foundation.

It was founded in 2006 but it’s not as known as it should be.

That’s something you learn when you have a kid like Jeremiah go through multiple surgeries while you wait for a cure.

The founders of this organization, Ed and Tina McGovern, have been through this with their son, Jack, and that’s why they started the Jack McGovern Coats Disease Foundation to raise funds for research, and to give hope to kids like Jack and Jeremiah as they cope with their condition.

They promised Jack that they won’t rest until there’s a cure. And I won’t rest until we find one for Jeremiah.

Since there’s no cure for Coats’ disease yet, we’re playing a waiting game.

It really gets to me that a little kid can get this disease at such a young age, and we don’t have anything to reverse it. Seeing a child grow up in front of my eyes, in and out of surgeries since he was only 2 and half years old, is hard.

We’re on a seesaw — sometimes, Jeremiah’s condition gets a little better, other times it gets a little bit worse. And when you’re trying to feel positive, but doctors give you bad news, it’s like getting punched in the stomach.

It’s also tough to watch his parents go through this. I’ve known Jeremiah’s dad since high school. We played ball together, and he’s my best friend — but we’ve always said we’re more like brothers. So it’s really hard, seeing this happen to someone I’m so close to.

Courtesy of Olivier Vernon’s Family/NFL My Cause My Cleats, used with permission.

Jeremiah’s a fighter. That’s why I know I have to help fight Coats’ disease — and maybe we can help the cause for other kids as well.

He loves sports, and he’s playing soccer now. It’s his first time in organized sports, but he’s making some plays out there.

My godson deserves a chance to do anything — so while we can’t cure this disease yet, more awareness would make a big difference.

The Office of Rare Diseases Research (ORDR) of the National Institutes of Health (NIH) lists Coats’ disease as rare — less than 200,000 people in the U.S. are affected. That means not many people know about it.

We need more people to know, to have hope of finding a cure, and more resources. And that’s why I’m sharing Jeremiah’s story, and sharing what you can do for this cause.

Photo by Evan Pinkus

You can help me pass some positivity to the kids living with Coats’ disease, too. I’m helping by participating in #MyCauseMyCleats, the NFL initiative that lets us wear special cleats on the field to draw attention to good causes.

My cleats will be auctioned off in an NFL auction, and 100% of the proceeds will go to the Jack McGovern Coats Disease foundation.

You can join me by spreading awareness, helping families with Coats’ disease stay positive, and getting involved with the foundation.

I give Jeremiah words of encouragement whenever I can. I know we can fight for a cure and keep him, and other kids like him, feeling hopeful.

Olivier Vernon is one of more than 750 NFL players who lace up for charitable causes as part of the NFL’s My Cause My Cleats initiative. Starting November 28, NFL players will reveal their custom cleats, many of which will be auctioned to raise money for the charitable organizations they support. For more information, visit www.nfl.com/mycausemycleats.

Read more: http://www.upworthy.com/ever-hear-of-coats-disease-this-nfl-player-hadnt-until-one-day-everything-changed

Author: The Latest Online

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