Sunday, September 26, 2010

Discussion with President Barack Obama about Neurofibromatosis



THE WHITE HOUSE


Office of the Press Secretary


___________________________________________________________


For Immediate Release


September 22, 2010



REMARKS BY THE PRESIDENT


IN A BACKYARD DISCUSSION ON HEALTH CARE REFORM


AND THE PATIENT’S BILL OF RIGHTS



Brayshaw Residence


Falls Church, Virginia



11:59 A.M. EDT


THE PRESIDENT: Anyone else? I know it’s warm out here, but I want to hear from as many people as I can. Go ahead.



Q Hi. Thank you so much, Mr. President, for having us here. I want to thank you. I just have a comment. My son, Sammy, who was here, is seven and he has neurofibromatosis. I don’t know, have you ever heard of it?



THE PRESIDENT: You know, I’ve heard of it. But you should describe for us what that means.



Q It means that he had a spontaneous mutation on his chromosome. And he was diagnosed two and a half years ago. And it just basically means your tumor suppressor doesn’t work properly, so every nerve cell has the potential of becoming a tumor.



THE PRESIDENT: Which is pretty nerve-wracking for mom.



Q Oh, it’s unbelievable. And there’s a wide spectrum, so some people end up with minor complications but others have serious problems. And he’s already had surgeries and things of that nature. So I just want to thank you and the Secretary and congressmen and senators, because it’s life changing for a parent.




THE PRESIDENT: Well, Sammy looks terrific. I saw him running around here.



Q He is terrific.



THE PRESIDENT: And I’m just glad to give you peace of mind. Look, people ask me sort of how do I stay calm in my job. The reason I stay calm in my job is that every night at six-thirty, no matter how busy I am, I go upstairs -- I’ve got a very short commute -- (laughter) -- and I go upstairs and I have dinner with my wife and my daughters. And as long as they’re doing good, as long as they’re healthy and happy and running around and telling me stories about the crazy things that happened at school today, then there’s a certain baseline that just gives you that sense, well, I can take anything, right?



Now, the flipside is when Malia or Sasha get a sniffle, or an ear infection, or a scrape, or a bruise, I’m over there just miserable. And I still remember Sasha, when she was three months old, one night she just wasn’t crying right. As a parent, you start recognizing, that’s not how she cries. She wasn’t hungry, it wasn’t a diaper change. Something was going on.



So we called our pediatrician, and he said, “Well, why don’t you bring her down?” And this was in the middle of the night. This is like one o’clock in the morning. And he was willing to see her, and he pressed on top of her head, and he said, “You know, she may have meningitis; I want you to go to the emergency room.”



And it turned out she had meningitis, and she had to get a spinal tap, and they had to keep her there for three or four days. And the doctor was talking about if this didn’t -- if her temperature didn’t come down and if we didn’t solve this, she could have permanent damage to her hearing or other effects.



But I still remember that feeling of just desperation, watching the nurse take her away to provide treatment for her. But I was thinking, what if I hadn’t had insurance? What if I was looking at my bank account and I didn’t have the money to cover her? How would I be able to face my wife, and how would I be able to look in the mirror if I didn’t feel like I could somehow make sure they were okay?



And that’s what this is about, ultimately. I mean, we’ve got to make sure that health care -- our health care dollars are used smartly. We’ve got to make the system work better for consumers. We’ve got to make it more responsive. But ultimately, the thing that’s most important is, we’ve just got to give people some basic peace of mind. And I’m just so glad that I’m able to stand here before you and hear these stories, and hopefully it gives you a little more peace of mind. (Applause.)



So, all right, well, thank you, everybody. Appreciate you. And if anybody else has any questions, they can come up and we can chat in the shade here. (Laughter.) Because I don’t have to go right away, and maybe we can -- these guys will take some pictures. So thank you.



END 12:42 P.M. EDT




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