I was 20 weeks pregnant when my husband and I learned our firstborn would be born missing the entirety of her right leg as well as her left forearm. We had many questions, but we never questioned whether our health insurance would deny her before she was even born; we never questioned whether our health insurance would pay for a prosthetic leg or arm.

At the time, my husband happened to be working as a software engineer for a company with over 50 employees. However, if he had been an independent contractor or working for a startup (as he had been for the last many years), then she would not have had protection from pre-existing condition exclusions. Insurance could have denied her just because she was born different.

As we joined various amputee support groups online, we found folks rejoicing that their prosthetics would now be covered by health insurance as a result of the Affordable Care Act. We immediately read through our own health insurance paperwork and saw that prosthetic devices were covered, at a rate of $3k for each person, every 3 years. We contacted the insurance company and were told under the new laws, this paperwork would soon be rewritten, and there would be no time or dollar limits to the coverage. Thanks to the legislation President Obama helped create, Rosie would get the arms and legs she needed to function, to be happy, to run and play and learn just like any other kid.

Rosie did receive her first leg, at one year old, from Shriners Hospital in Greenville, SC. They offer free arms and legs to anyone under 18. But even they charge insurance to get what payment they can.

Then we learned that local prosthetists cannot take on the cost of all the adjustments to Rosie’s arms and legs over time if they were not the ones to make her limbs. All of the cost of adjustments is built in to the cost of the limb. Rosie grows! She needs length added every month or so, she needs adjustments to her socket (the part that attaches it to her body), parts break… Take a $15,000 leg and put it in the hands of a preschooler. What do you think is going to happen? Joints clogged by sand or mud, pieces twisted, liners ripped, the list goes on.

We decided as a family to see a local prosthetist, Hanger Clinic. They have experience with amputees who are missing all of a leg, like Rosie is (called a hip disarticulation). They have an office just 15 minutes away, and another 30 minutes away. We can be there in a flash. Once, we were about to leave on a 12 hour drive up the coast, and Rosie’s knee bumper broke. She couldn’t walk. I called her prosthetist in tears, not knowing what to do. The car was loaded, we were ready to leave. He met us at the house and saved the day!

Hanger works with us – they will not turn us away if we are not able to pay our $10,000 combined deductible and co-insurance every year. And Hanger can do this, they can take us on, because they at least get paid by our health insurance, United HealthCare, through my husband’s employer.

If the Affordable Care Act goes away, so does funding for Rosie’s limbs. Our out of pocket costs would be tens of thousands of dollars, every year. And that’s for child sized legs. Once she’s teen sized, her legs easily will cost over $50,000. And she’ll still grow out of them until she’s an adult and can maintain a size.