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The thing about his Tuberous Sclerosis is that it is very much a pre-existing condition.
If I were ever to leave my job or lose my job, one thing that we've really thought a
lot about was, would we ever be able to get William health insurance again? Considering
all the health issues and the maintaining of his condition that he will have to do over
all the years, getting health insurance was probably unlikely and it would have very much
affected his quality of life.
One of our biggest concerns too was as William becomes an adult and has to get health care
on his own, and was basically uninsurable the way it was before, the thought that he
wouldn't be able to fulfill his own dreams in terms of what he wants to do for himself
and what kind of job he wants to get when he's older -- that he would be restricted
or potentially couldn't even get a job so that he would qualify for Medicare and get
care that way, or just decide, "you know what, I'm not going to take care of myself. If I
can't get health care i'm just not going to go to the doctor, I'm not going to see the
specialists I need to." And not manage his condition, which was very scary for us.
With William's condition, he has tumors in his brain, he has tumors in his kidneys. And
these are going to need to be checked on and maintained regularly for the rest of his life.
To know that he will be guaranteed that health coverage going forward, it really gives William
a life that, as his parents, we want him to be able to lead. Thanks to health care reform,
he's got it.