My daughter, Kumiko, has MMA, a condition which resulted in life altering brain damage for her.
It didn't have to be that way. Although I had medical insurance and paid the extra money to get an amniocentesis done when pregnant with her, MMA wasn't on the list of conditions they tested for in Colorado. So her doctors misdiagnosed her symptoms and did the opposite of what she needed for four months before they found their mistake. This error resulted in extensive brain damage and a severely autistic child who requires expensive special formula fed by trained caretakers, in order to survive.
She is now so delicate that constipation can put her in the hospital, while others with her diagnosis are able to thrive with just a change in diet and far less intervention, because they got the early screening and they live where screening is routine.
Many hundreds of thousands of dollars in additional care is now needed to keep Kumiko alive, and at nine years old, she cannot feed herself, use the toilet on her own, or express her needs meaningfully. She requires special accommodations at her school and may require organ transplants to reach the age of 30.
Recently proposed legislation in Texas and other places would make minimal pre-natal testing opt-in only, and would make it harder for the legislature to add new diseases to the list of covered conditions when you ask for the test. This is the third version of such legislation that I know of, and every one of them is bad. If you want to save the state money, and save children from a lifetime of misery - please sign the petition below and throw out of office any politician that votes in favor of newborn screening opt-in legislation.
One more thing on Obama Care
After I got laid off from my job, private healthcare was no longer available for Kumiko. Since that time the State of California has been footing the bill for her care, for which I am eternally grateful; It's actually much better care than what she was getting under private insurance. But there's unfortunately no mechanism for me to pay in and help defray the costs of her care; all I can do is bring cookies to every doctor visit and after our hospital stays (sometimes I also pay for tests out-of-pocket).
Obama Care actually provides a payment mechanism by ending the pre-existing condition restriction for children, and forcing insurers to offer plans for people with special needs kids.
Before you join the anti-government forces out there shouting about how Obama Care is going to bankrupt the nation, please, consider the true costs of the alternative.