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Santonio Holmes' son "T.J." at the sickle cell anemia benefit....

Santonio Holmes' son "T.J." at the sickle cell anemia benefit. (Nov. 7, 2011) Credit: Patrick E. McCarthy

Santonio Holmes and his 9-year-old son talk every day by phone after school.

On the good days, they talk about football and homework and video games.

On the other days, they talk about the pain -- the horrible cramps and aches that Santonio "T.J." Holmes III gets in his abdomen and legs as a result of suffering from sickle cell disease.

The pain, and learning to deal with it, has been an inescapable fact of T.J.'s life since he was diagnosed with the disease hours after he was born.

Sickle cell disease is a genetically inherited blood disease that affects African-Americans to a higher degree than other parts of the population, according to the Sickle Cell Disease Association of America. The disease can result in blood flow blockages that cause pain, broken bones, damage to internal organs and even strokes.

Forty years ago, the average life expectancy for someone with the disease was 10, according to Dr. Monica Bhatia, a specialist who treats sickle cell patients at New York Presbyterian Morgan Stanley Children's Hospital. Today, with the help of drugs and other interventions, the average lifespan for someone with the disease is the mid-40s.

"He's a really brave kid," the Jets wide receiver said of his oldest son. "He has been through a lot."

So has Holmes. During the course of his NFL career, Holmes, 27, has built a reputation as a big-time playmaker on the field and a bit of a trouble magnet off it. Yet behind the headlines, both good and bad, is the story of a young father struggling to do the best he can to be the parent of a very sick child.

T.J. has been in and out of the hospital for much of his young life, undergoing multiple blood transfusions and a major operation before last season to have his spleen removed.

Until his son was born, Holmes knew very little about the disease and was unaware that both he and T.J.'s mother, his high school girlfriend, had sickle cell trait, meaning they both carried the defective gene but do not have the disease themselves.

Holmes' two other children by a different mother -- Nicon, 9, and Shaniya, 5 -- are not afflicted with the disease.

"When you hear the news that your son has a disease like this, it's tough," Holmes said. "It gives you a whole different perspective on things."

Now he is trying to do what he can to educate himself and raise money to help educate others about the disease. In 2009, he sold the gloves he used to make the winning touchdown catch in Super Bowl XLIII for $70,200 and donated the money to the Sickle Cell Disease Association of America.

He formed a foundation, III and Long, to help fight the disease and held a bowling event in Linden, N.J., this past Monday. A number of Jets, including coach Rex Ryan, Plaxico Burress and Mark Sanchez, participated in the event, which raised more than $35,000 to fight the disease.

Burress, a close friend of Holmes', said T.J. and his father have a unique bond.

"I don't think there's too many people out there who would have handled this the way he's handled it," Burress said. "He's turned a negative into a positive by not just trying to help his son but trying to help kids all around the world. I think it says a lot about his character."

During the school year, T.J. lives with his mother outside of Atlanta, though he comes to New Jersey at least one weekend a month to stay with his dad. He was at the fundraiser, racing around, bowling and hanging out with his father and his friends. In other words, he was behaving like a typical 9-year-old -- a typical 9-year-old who was being asked to give media interviews.

"My dad, he's my best friend," T.J. said. "He understands me and he tells me to be brave. And I am."

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