Last Wednesday, former and current Giants players gathered at The Trump National Golf and Country Club in Bedminster, NJ to help a Giants family member do something special for a cause very close to his heart.
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For seven consecutive years, Shaun O'Hara has organized the Shaun O'Hara Foundation Celebrity Golf Classic to help raise money and awareness for life threatening diseases for which there is little funding. The mission focuses on Cystic Fibrosis (CF), an affliction close to Shaun's heart since he became the New Jersey Ambassador of Hope for the Cystic Fibrosis Foundation in 2007.
"I can't say no to the kids. I've always been a softy for kids," Shaun said. "The goal is to raise funds and cure cystic fibrosis, but also it's great to have the kids come to an event like this and, for a day, forget they are battling a life threatening disease. It is worth its weight in gold. When you bring a lot of good people together you can accomplish so much for a common cause. That's why we do it. It's a great opportunity for people to help others and have fun while doing it."
Shaun became connected to the Cystic Fibrosis Foundation when Bill Squires, a game day operations consultant for the New York Giants, was in need of help.
"When I found out my son had cystic fibrosis I went to Peter John-Baptiste and told him I needed someone to be a face from the Giants to help awareness," Squires said. "Shaun did it without hesitation."
Since that day, Shaun has not only worked tirelessly to do what he could to help find a cure for the disease, but he has also formed a very special bond with Bill's son, Sean Squires.
"We've become really, really good friends," Sean said. "Just a month ago we were texting back and forth about coming to this. I remember in the locker room in the old Giants Stadium, before I even knew I had cystic fibrosis, he came in and just started talking to me. A few years later he became the Ambassador of Hope for Cystic Fibrosis and it became a strange coincidence that happened."
Sean's father Bill likes to tell a special story from 2008.
"In 2008, my son Sean was in the hospital getting an IV and other therapies," said the elder Squires. "Shaun came down the day after he got his Super Bowl ring and wasn't down there for five or 10 minutes, but spent an hour and a half there. The fact that Shaun no longer plays but is still committed to helping us find a cure is very, very special."
Photos of the Shaun O'Hara Foundation Celebrity Golf Classic at The Trump National Golf and Country Club in Bedminster, NJ.
Shaun has also grown extremely close to Anabelle Christ, a girl that will turn 14 at the end of May and has been fighting cystic fibrosis her entire life. The golf event is one of the highlights of Belle's year.
"It's more fun every year," Belle said. "It's a good feeling to see what everyone has put into this event, and it means a lot to see that people care. Warm and fuzzy, I guess that's the best way to explain it."
Most years, Belle joins former Giants punter Jeff Feagles in his cart for 18 holes, but this year the honor fell to long snapper Zak DeOssie.
Belle's mother, Liz Poret-Christ, sees first-hand the impact the event has on her daughter.
"It's really hard to put into words how he has impacted her life because it sounds so silly," said Liz. "She spends a couple hours riding around in a golf cart, why could it possibly mean so much to her? But it has really transformed her life.
"These kids emulate the worst possible role models, pop stars, actors that wind up in rehab. There's nothing good that comes from those kinds of role models. For Belle, who looks up to Shaun and Jeff, and spends the day with Zak, she sees very athletic people that work on their craft and give back to their community. Through injury, they fight and persevere and they come back better and stronger than they were before. Those are exactly the kinds of role models we want for her because there is always going to be the next infection or illness, or things she can't do. She has to have that fighting spirit, that warrior-like spirit, and there aren't a lot of teenage role models that can emulate that for her."
"We're definitely closer than when we first met," Belle said. "I got to meet his Shaun's son Jack this year. That's great."
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"It has meant the world to us that he has stuck by our kids for so long when it might fall out of favor, unless you have a child with it or family member with it," Liz said. "The fact Belle and Sean Squires have come to mean so much to him means the world to us."
Belle and Sean both spoke at the dinner after golf, a role they embrace.
"It is remarkable that a young girl like Belle is willing to go up and talk in front of people," Shaun said. "I'm always hesitant about asking her to talk because I don't want her to feel pressure. I want her to willingly do it and enjoy it. She is a superstar and does a great job."
"From an emotional standpoint, she feels very empowered," Liz said. "She is standing next to this giant, literally a giant that is so popular and is on TV. She feels like a rock star and I can't think of any other environment where she feels so proud of herself for talking about something that is hard to talk about. She is more likely to stand up in front of a room with 200 people and talk about what her daily fight is like than she is to the kid sitting next to her in math class. That has been a really emotionally powerful thing for her to not be ashamed, and not feel like she has to hide who she is and what she does every day. Little by little, it becomes more and more a part of her being who she is and what she does every day. I think that really started through speaking at the O'Hara events."
"I can't imagine how nervous she must be to go in front of a couple hundred strangers and tell her story," Shaun said. "I think that just shows the strength she has. It's funny. She says, 'That's the easy part. I already do the hard part with the medicine, the pills, the nebulizers, the treatments,' so this is easy to her. I love having her talk and tell her story because each one of these kids has a different story and it pulls on your heart strings. There won't be a dry eye in the house. I start tearing up just introducing her, seeing her and knowing how much she has meant to the cause."
Sean Squires' words were extremely powerful and drew a standing ovation. "I'm going to turn 18 on June 13. My Dad and I are going to go skydiving," said Sean. "The average life expectancy for people with CF is anywhere from 36-38 years old. That means I'm about middle-aged."
Cystic Fibrosis is a genetic disorder that causes damage to the lungs and digestive systems. It affects the cells that produce sweat, mucus and digestive juices. It causes those secretions to become thick and sticky, clogging the same areas they are meant to lubricate. CF afflicts only 30,000 people in the United States and 70,000 people worldwide, which makes raising money to find a cure very difficult. It is the number one genetic killer of children in the US.
Just a decade ago, those with Cystic Fibrosis rarely lived into adulthood, but with new treatments, patents are now living into their 20's, 30's and beyond. The disease can be managed by daily therapies in the morning and evening and countless pills to help lung function and digestion.
Belle spends nearly 500 hours a year in a mechanical vest that helps her lung function, and takes more than 6,500 pills in a healthy year. But that hasn't stopped her from playing goalie for her lacrosse team and living an active life.
"It's harder than just working at a job," Belle said of managing the disease. "It's more than once a day. You have to work on it your whole life to make sure it's going the way it has to go. It can't be perfect, and you can't just stop working on it because you'll get sicker. It's hard to work on it all the time to make sure you're healthy."
But there have been recent breakthroughs with drugs that do more than just treat the underlying cause of the disease.
"One of our big breakthroughs just came a few days ago when a FDA advisory panel approved Orkambi, which is for 35% of the population," said Stephanie Karlo, the Executive Director of the Greater New Jersey Chapter of the Cystic Fibrosis Foundation. "It corrects the underlying genetic defect behind the disease. It doesn't just treat the symptoms. It actually changes the defective genes. This one will hopefully be the second drug to come to market by July 5; Kalydeco was the first in 2012, and the impact of those drugs is life-changing for the kids we have."
"It's good that there's an outcome now," Sean Squires said. "We are coming really close to finding better treatments and a cure so there won't have to be events like this in the future."
Both drugs will apply to Sean and help improve his quality of life and likely extend it as well. But since CF is a genetic disease, there can only be a cure if the genetic defect can be corrected extremely early in life.
"The results speak for themselves," Shaun said. "The best part about it is that we are seeing children with CF becoming adults. They are growing up and having families of their own, when 10 years ago that wasn't a possibility. There wasn't a realistic possibility for them to reach their 18th birthday. But now we are seeing the strides that these young kids can become adults and have fruitful lives. Last year, Sean Squires was talking about getting his driver's license. I remember when he was a little kid and we were teaching him to catch and throw a football. So that's huge. Along with that comes a concern that people are going to stop giving to the cause because the mission is to cure the disease, but as long as there are kids with the disease. we'll keep fighting."
Belle, unfortunately, is in the unlucky 55% of the CF population that the new drugs will not be able to help.
"Quite honestly, the drugs that have come out, including the one that just got recommended to the FDA this week, don't apply to Belle," her mother Liz said. "So if we don't stand up, fight, raise money, awareness and keep talking about our fight, then who is supposed to? It is encouraging the science progresses a little bit every year, but we can't stop because once 50% of the population gets the drug that will correct the genetic defect, there's still 50% of the population waiting. If I don't want other people to leave my child behind, I can't leave their children behind, either."
"Shaun has been doing this for over seven years, raising over a quarter of a million dollars for the Cystic Fibrosis Foundation," Karlo said. "Shaun is so committed, he has been an ambassador for the foundation for years, he wants to know every kid and their story and visit kids in the hospital. He has gone above and beyond. It is always amazing. He is an incredible person."
Shaun doesn't do it alone. Many of his teammates and members of the Giants organization came out to support his great cause. Josh Brown, once an ambassador for Cystic Fibrosis himself, was in attendance, as were current Giants Weston Richburg, Brandon Mosley, DeOssie, Eric Herman, Ryan Nassib and Justin Pugh. Former Giants OJ Anderson and Stephen Baker played, as well as Frank Mara, the team's vice president of community relations. Of course, where you find one former Giants offensive lineman, others aren't far behind. Both David Diehl and Chris Snee were in attendance to help their former teammate.
"It goes to show you that being a New York Giant is more than just what you do on the football field," Diehl said. "One thing you learn early on is that the Giants are involved in so many organizations and it's all about reaching out to use your so-called celebrity status to benefit other people. For Shaun to have this every year goes to show you his commitment to not only who he was on the field, but also who he is off the field. For someone that grew up in the state of New Jersey like Shaun did, to have this here and as a staple is great."
"It speaks to the type of guy he is," Snee said. "I know how close this is to him from the moment he started. He takes great pride in this foundation, and obviously it has been very successful. It does a lot of good in this area. Just being here with the kids today is always the best part of the day."
"It goes back to the 'Once a Giant, always a Giant tradition.' We take care of our own," Shaun said. "It really is tremendous to see how many guys I played with, and for the current players I didn't even play with, come out and play. It is great how current and former Giants take care of each other."
"I know this is something I want to be at, not just because it is a great thing, but because it's Shaun. He is a brother of mine," Diehl said. "The five of us, Kareem (McKenzie), Richie (Seubert), Snee, we have a bond together and whenever one of us calls and asks you to do something, it's, 'I'll be there.'"
"We do stick together. We are always here to help each other out and always will be," Snee said. "That will never change."
Of course, when the offensive line is involved, there is always room for some mockery. "To see those big blue eyes of Shaun's getting all teary, we love it," Deihl said.
There were a lot of tears all over the dining room when Sean and Belle took the mic at the end of the night. Belle had a personal message for Shaun, too. "Thank you, and then a big hug because he has worked real hard to help cure the disease. Now that we're getting closer to curing the disease, it's people like him that help us find it. He's a big supporter, so he's great."
Her mother Liz has seen the type of person Shaun is up close for the last seven years.
"He is a very selfless, honorable man," she said. "He made a promise a long time ago to do all that he could for our kids and he hasn't stopped. It doesn't matter if he's not wearing a uniform or a suit and tie. He keeps going and thinking of the next thing he can do to make the event better and raise more awareness. He is an incredible person. He has changed our lives. He is very selfless. I call and he picks up the phone. Belle sends an email and he sends one back. He looks for no recognition. He looks for no publicity, and it is so honorable and so selfless. He is an incredible human being, he really is."
The Shaun O'Hara Foundation can be found on Facebook HERE
The Cystic Fibrosis Foundation can be found HERE
