Let It Go: My Grandchild with Cystic Fibrosis

Published in ChicagoNow, May 6, 2015

It’s hard to describe the pain of watching someone you love challenged by a chronic illness. When I learned my 2 ½ -year-old granddaughter had Cystic Fibrosis almost six years ago, I felt like I had been punched in the gut. Your grandchild is not supposed to struggle with a serious condition. That’s not the natural order of things.

My daughter had just given birth to her second child (thankfully he did not have it). Instead of joy over his birth, I was grappling with what CF would mean for my darling little granddaughter. No matter how much I read (I filled a huge binder), nothing answered all of my questions or quelled my fears.

Somehow everyone acclimated to a new normal. My granddaughter learned to swallow countless “medicine balls” (enzymes) and other medications at the tender age of four, much preferable to having to eat them in applesauce. She grew used to doing her “jiggle vest” and using her inhalers. And my daughter adjusted as well, adding two new dogs and another little brother to the chaos.

More amazing still, my granddaughter taught me so much about bravery in the face of adversity. She’s such a plucky little girl who has become an awesome swimmer. She recently won the coach’s award for her swim team for showing the best effort, improvement, and character. She endures blood draws and throat cultures like a pro. Sometimes, it’s hard to remember she is also a young girl with CF.

How did she get CF? It’s a genetic disease that needs a recessive CF gene from each parent. Neither of her parents had any idea they were carriers. The one my daughter passed to her daughter came from me. I found that after the fact. Perhaps many generations ago, a baby somewhere in Lithuania died from CF. Who knows? Lots of babies died back then. But in what we know from our family tree, CF did not exist. My granddaughter was just unlucky, I guess.

Ironically, she is a lucky unlucky girl a way. Thanks to support from the Cystic Fibrosis Foundation, researchers at Vertex developed a new medication that targets the root cause of the genetic mutation she inherited from her father. My granddaughter is among the 4% of people with CF helped by Kalydeco. She had been relatively healthy prior to being diagnosed. So far, she is thriving since she started taking Kalydeco almost 3 years ago.

Although she has developed other interests typical of 8-year-olds girls like her collection of American Girl dolls and sleepovers with friends, my granddaughter still loves Elsa from Frozen and her song, Let it Go. Like Elsa, she has learned to accept her condition and celebrate her uniqueness. When she belts out Let It Go, she really feels, “The fears that once controlled me can’t get to me at all.” I can’t help tearing up every time she sings that song.

The Cystic Fibrosis Foundation is an awesome organization that raises and invests hundreds of millions of dollars to support the development of new CF drugs and therapies. Research is helping to develop other promising new drugs, and almost all money donated to the Cystic Fibrosis Foundation goes directly to fund this research. My hope is that someday all people living with CF can sing at the top of their lungs, Let it Go!