Why do I support health care reform? I can sum it up in one word: Sophie.
Sophie is my beautiful niece, who was born in May. She was only four months old when my brother and sister-in-law noticed something odd. She was blinking for extended periods, and seemed to be unresponsive. As worried parents do, they took her to the pediatrician. At first, they thought that she might have bumped her head as babies do -- they're so top-heavy that they tend to go head-first into stuff. It happens.
If only that were the case.
They ran an MRI. The results weren't good. Tumors. That's what's causing the seizures.
Tuberous sclerosis. I'd certainly never heard of it. It's one of the severe seizure disorders of childhood. Tuberous sclerosis complex is a genetic disorder that causes tumors to grow in the brain and other organs. I guess you could say Sophie is lucky -- they have only found tumors in her brain. But it's not a luck most would want. Many kids with tuberous sclerosis do fine. Others, so wracked by seizures, end up severely mentally disabled. Autism is common. As are behavioral issues.
Obviously, we won't know for years how severely Sophie will be affected. Right now, she's right on track developmentally, and she's such a happy little girl. Antiseizure medicines have cut down on the number and their severity. My brother told me that a week or so ago, she smiled at him in the middle of a seizure. She's a tough little thing.
Sophie. That's why we need health care reform. Sophie -- through no fault of her own -- will never be insurable. She drew a horrible hand in the genetic cards. She's looking at a lifetime of medications, MRI scans, and possibly surgery. No insurance company would be willing to take her on. She's a "dog," in the language that health insurance companies have been known to use. My brother and sister-in-law are hoping and praying that they keep their jobs. The bills have already added up -- even with the decent coverage they get from work.
We're the wealthiest country in the world. And we're always saying what a great and compassionate country we are. How can we say that when we allow insurance companies to refuse to cover people with tuberous sclerosis and other pre-existing conditions? How can we say that when we allow insurance companies to refuse to cover adolescents who have already reached their lifetime limits? How can we let parents -- hearts already torn by finding out that their beautiful daughter has a lifetime of health struggles ahead --also be terrorized by the thought that a job loss would mean no health care for their baby?
We're better than that. Sophie deserves better than that.