Life in the Granelle household was far more stressful before the Patient Protection and Affordable Care Act (ACA). Our lives were challenging enough having two children with cystic fibrosis. But the added burden of navigating a labyrinth-like and indifferent insurance system only compounded our family's sense of crisis and fatigue. 

We had health insurance and paid high premiums to secure the peace of mind knowing my sons, Andrew and  Jamie, would be taken care of, not realizing until too late how naive we really were.

Andrew was diagnosed with cystic fibrosis at three months old. Since his birth in January 1991, our baby had been losing weight, projectile vomiting, and having up to eight bowel movements a day. Then his breathing became labored.

He was first admitted to the hospital at three months old for a “tune up”: a term we became very familiar with that included IV antibiotics as well as enzyme and medication adjustments. His hospital stay lasted four weeks before we could take him home again.

Two weeks later, we frantically returned. As I held my limp baby who couldn't breathe or eat, thoughts of more needles poking and prodding him and my own powerlessness to control the outcome nearly paralyzed me. I was mentally and physically drained. I also had to try to stay somewhat present for our three-year-old daughter who was left at home many times with our “support team” of family, friends, and sitters. Our strength and unity were tested again during this trip. 

We lasted three more weeks at home before a panicked midnight call to our doctor brought us back. “Go directly to the emergency room,” he told us. “I will call ahead, and they will take you immediately.” We arrived at the check-in desk only to be turned away.

I went numb.

The administrator explained that we had no insurance. My immediate response was, “Impossible!” before whipping my head towards my husband. 

“Didn't you pay our $3,000 premium?”

“Of course I did!” he shouted.

As the administrator searched deeper, she explained that we had exhausted our policy. I couldn't even comprehend what this meant. She began to explain that insurance policies have a lifetime cap and in less than three months we had reached it. The life drained out of me. Taking its place was an anger over the false sense of security that dutifully paying for insurance had brought.

With God on our shoulders, Andrew's doctor came storming in, and Andrew was admitted immediately. His doctor always went above and beyond, and we are forever grateful and will never forget him. This visit lasted another three-and-a-half weeks. 

Andrew was stable, and I was finally feeling a sense of hope. Watching him smile, eat, play, and sleep was all new and welcomed with joy and contentment. We knew more challenging times laid ahead, but we were happy to be all together and home.

The next few years were some of the most financially difficult of our lives. Without insurance, the cost of cystic fibrosis patient care became astronomical.

We turned to Social Security Disability insurance. Denied -- a word I became very familiar with and hated. We finally got approval from another insurance company, however our premium was $3,500 per month. Andrew's monthly expenses -- for survival -- were approximately $3,000 per month, which didn't include co-pays and other out-of-pocket expenses.

Hours, days, and months of coordinating and researching what was available to help us was another draining task, but one I knew I needed to make happen. We needed $6,500 a month just for Andrew. We struggled for years. We lost ourselves in the process, fighting to keep our family thriving. I honestly don't know how we did it. It's a bit of a blur and thinking back all I can see is gratitude that we managed.

Fast forward to August 1995 when our second son, Jamie, was born with meconium ileus, an extremely life-threatening complication of CF. Jamie laid in the hospital for three months and underwent two surgeries. In October, doctors sent him home saying they'd done all they could.

Nurses taught me how to insert a feeding tube through his nose into his stomach, and we fed him through IV on a slow drip through the night. We took turns staying up 24 hours to make sure he didn't asphyxiate or develop some new complication. It was another mentally challenging year. Our “support team” did not let us down. Food, babysitting, cleaning, and paid utilities were just a few of the things our family and friends did to keep us afloat. 

We finally got Jamie to a place where he was able to eat small amounts numerous times a day. He too started to thrive with baby steps, which was everything we could have asked for. Achieving the smallest milestone seemed like we had climbed Mount Everest.  

We had our own problems with Jamie's insurance, which was $3,600 per month. We incurred more monthly expenses because it did not cover some of his meds or formula.

After years of relentlessly surmounting strenuous obstacles, my husband received an offer to work in North Carolina, and we decided to move from our home in New York. We were defeated. Not by illness but by the government and insurance companies. We had no choice. We no longer could manage the financial burden. We saw no other way then to sell everything to pay off our debts leave our support team, and head to North Carolina where we could benefit from the lower cost of living. The better weather was another bonus.

My story is like many. Taking care of a chronically ill child is a difficult task in itself, but one that parents' love and a good support network can overcome. The most devastating part of our family's experience was the compounded worry of being able to afford and access the care we knew existed and that our sons needed to survive.

The ACA has been life changing for us. Because of the ACA, my sons cannot be denied access to or be charged more for insurance just because of their pre-existing condition, unlike before.

The ACA has relieved financial challenges and obstacles people with CF face with treatments. Although the ACA is not perfect, it ensures that CF patients cannot be denied coverage, charged more, have their benefits limited, or subjected to annual and lifetime limits simply because they were born with cystic fibrosis.

Interested in sharing your story? The CF Community Blog wants to hear from you.