Why We Need to Pass the ACE Kids Act for Medically Complex Children

My daughter Caroline was born with a rare neurological condition known as alternating hemiplegia of childhood. Only 800 people worldwide have the condition, and just getting the diagnosis took years of travel to children’s hospitals across the country.

During the early years, when we didn’t have a name for what she was going through, Caroline would cry for hours. She was unable to eat and even the slightest change in her environment caused seizures and severe pain.

We paid out of our own pockets because private insurance wouldn’t cover hospitals outside our Tampa Bay area, much less pay for many of the recommended medications and therapies. And so traveling for our daughter’s very unique condition connected us to families all over the United States. In fact, there are millions of families who struggle to coordinate care for their children with complex conditions across many states, facilities, regulations, and payment systems.

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