Growing up in Nyack, New York, identical twins Devin and Jason McCourty were happy, healthy and athletically gifted. Both played defensive back for Rutgers and both were talented enough to be drafted into the NFL in 2010. Devin was selected in the first round by the New England Patriots and Jason in the sixth round by the Tennessee Titans.
However, the specter of a very serious disease – sickle cell – has always lingered over the McCourty family and in 2011, the brothers decided it was time for them to get involved. They partnered with an organization called Embrace Kids and formed their foundation, Tackle Sickle Cell.
As children, Devin and Jason had a vague understanding that there was a serious illness in their family. At the age of five they were taken to the hospital for a blood test. To everyone’s relief, the tests turned up negative; the brothers did not carry the trait for sickle cell.
However, their father’s sister and brother both have the full-blown disease and have spent their lives fighting it. In addition, Devin and Jason’s father who carried the trait, died when the twins were just three years old from complications related to asthma. The underlying cause may have been related to the sickle cell trait.
The sickle cell disease, also known as sickle cell anemia, is a hereditary blood disorder affecting people whose ancestors originally lived in tropical, sub-tropical and sub-Saharan regions of the world where malaria was common. It is life threatening and almost always shortens the life of those affected. In the United States, one out of every 500 African-Americans is born with it. In previous generations it was rare for someone to survive past their twenties. It is caused by a recessive gene – if both parents have it, it can be passed on to their children.
Those with sickle cell have abnormally shaped blood cells, which clog blood vessels and block blood flow. This lack of blood flow can cause life-threatening damage to the body’s organs. In addition to anemia and organ failure, sickle cell disease can cause pain, slowed growth in children, lung problems, eye damage and skin ulcers.
By adulthood the twins understood the full scope of what they had escaped and it wasn’t long before they realized that working to raise awareness and help find a cure was a fight they wanted to take on.
The money raised by their foundation is used in a variety of ways. In addition to donations towards research about the disease and programs to raise awareness, it provides scholarship money for children with sickle cell to go to college.
Through the work of their foundation the McCourtys hope to take some of the stigma away from sickle cell. In many cases, people are so ashamed they don’t even share the information with their own family members.
“If you have the disease or you have the trait, it has to come up with the person you’re dating,” Jason said. “My grandparents both had the trait. A lot of people were unaware of it. Or people were embarrassed. They had guilt for passing on the disease.”
Both Devin and Jason have worked to educate themselves as much as possible about the specifics of sickle cell as they proceed with their cause. Their aunt Winifred battles it on a daily basis, and even her individual struggles have shown the progress that is being made. Originally, Winifred was told she wouldn’t live past her 30s. She is now 64 years old.
“Treatments are getting better,” Jason said. “When it’s found in youth it’s making a huge impact.”
“One of the doctors said the toughest thing is that sickle cell affects more people than people think, but it doesn’t have a face to it,” Devin said. “Other diseases gain so much popularity. That’s the toughest thing. I think building awareness and people wanting to be involved will be huge. To put a face to the disease that doesn’t have enough recognition. The things they’re doing are fascinating and how close they are to finding a cure.”
Through their involvement they’ve also discovered fellow NFL players who carry the trait and have been personally affected by it. In conversations, they are reaching out and trying to get some of these other players involved with what they are doing.
The McCourtys have been overwhelmed with how quickly they’ve seen the foundation grow since its inception in 2011. In addition to blood drives, they have sponsored several fundraisers including 5K races and casino nights in New Jersey and are now working to branch out into the Boston and Nashville areas.
Equally gratifying for the brothers has been the reaction within the McCourty family.
Their mother, who had knee surgery just prior to last year’s 5K, has also been enormously supportive of her sons’ efforts and will be walking in this year’s event. The twins’ older brother, Barry, has also taken part.
And Jason described how excited Winifred was when they told her about launching the foundation. “She was just so proud and touched to know that what she’s gone through has inspired us to give back and help with the disease.”
Now they hope that by continuing to expand the reach of the foundation they can make a positive impact on helping future generations of both their own family and others.
For more information about Devin and Jason McCourty and the Sickle Cell disease, visit www.TackleSickleCell.org.