Shortly before my son Gabriel was born, we learned that he had a condition known as Hypoplastic Left Heart Syndrome which, without treatment, would be fatal. At only 13 days old, I watched as my son was wheeled into surgery to receive a heart transplant.

Luckily, the procedure was a success and Gabriel began to thrive, but due to his condition he will require medication and special care for the rest of his life.

In order to ensure that my son would always be covered and to make sure we could always pay his medical bills, my family applied for what is known as Supplementary Security Income in order to acquire Medicaid benefits for Gabriel. Little did I know that the process to get him qualified and keep him qualified would be a total nightmare.

The Social Security Administration, which runs the SSI and Medicaid programs, does not consider patients who have had heart transplants as people with lifetime conditions, which means that those patients do not qualify for permanent SSI status and must continually reapply in order to keep their benefits. Even worse, each time you resubmit there is never any guarantee that you will be accepted back into the program.

Heart transplant patients, including my son, must take anti-rejection medication for their entire lives and will always be medically vulnerable, and yet the Social Security Administration refuses to include them in the list of lifetime diagnoses that qualify for permanent Medicaid status.

Having a kid with a heart transplant is hard enough. There are so many things that we, as parents, have to deal with on a daily basis, including the fact that our babies may have limited lives. To add to that the fear that his medical insurance may be pulled with no real reason and hardly any notice is terrifying and wrong. That is why I am asking the Social Security Administration to change having a heart transplant to a lifetime condition, because no parent should ever have to keep proving that their kid is “sick enough” to be protected.