I Can Just Be Her Mom

For years, I feared for my child’s life. Then science did something amazing for people with cystic fibrosis

- Abby Alten Schwartz FROM THE WASHINGTON POST

Two years ago, my daughter, Samantha, graduated from college. She went on to start her first fulltime job and go apartment hunting with her best friend. These milestones, bittersweet for most parents, have felt monumental to me. As Sammie steps into her future, our family stands on the precipice of a life we didn’t dare contemplate before now. Because, until recently, I still believed I would outlive her.

My daughter was almost two when we learnt she had cystic fibrosis (CF), a progressive genetic disease that affects breathing, digestion and other functions while slowly destroying the lungs. She had been dropping weight for months, her once plump arms reduced to sticks, her belly distended. A sweat test detected CF, which a blood test confirmed.

“The good news is the life expectancy for someone with CF is almost 31 years,” her pediatrician said.

My husband, Stuart, and I sat in stunned silence. I was 31 at the time.

CF is caused by a mutation in the gene that controls how salt passes through cells. This causes a buildup of thick, sticky mucous in the airways that impairs breathing and leads to lung infections. It has been described as trying to breathe through a narrow straw all day long.

After her diagnosis, Sammie’s daily routine was daunting. She took more than a dozen prescription drugs, including pancreatic enzymes at every meal to digest her food.