‘I would say she is pretty fearless’ — West Michigan family raises awareness about cystic fibrosis

Posted at 5:45 AM, Apr 09, 2018
and last updated 2018-04-09 05:46:38-04

GRAND RAPIDS, Mich. -- On August 3, 2017, 8-month-pregnant Kelly Klotz left work early and in her gut knew something wasn't right. Hours later, she delivered her daughter, Kamryn, prematurely and via c-section.

Kamryn was quickly rushed to the neonatal intensive care unit at Helen Devos Children's Hospital, where she underwent surgery and was later diagnosed with cystic fibrosis.

"Cystic fibrosis is a genetic condition that results in the lungs producing a very thick fluid instead of a thin watery fluid, which we are used to as people who don't have cystic fibrosis," said Dr. John Schuen, a pediatric pulmonary and sleep medicine doctor at Helen Devos Children's Hospital.  "Most notably in babies, infants and newborns, cystic fibrosis is a condition that doesn't allow the normal nutrients to be digested."

Looking at Kamryn, she appears to be normal, a happy child, not one suffering from a life-long illness. But each day, B.J. and Kelly Klotz follow a specific routine to ensure Kamryn is healthy.

"So every day, on a normal day, as long as she is not sick or anything, she has two breathing treatments in the morning," said B.J. Klotz, Kamryn's dad. "It is albuterol and Pulmozyme. She does that through a nebulizer, And then, we do chest compressions on her by tapping on her chest and back to loosen the mucus."

Kamryn also must take enzymes before every meal to help her body properly digest her food.

Being diagnosed with cystic fibrosis 20 years ago was completely different from being diagnosed today, according to Dr. Scheun.

"It is a new day with cystic fibrosis, and because of all that we have learned from a medical standpoint -- from a research standpoint -- and thanks to the hard work our families do every day to keep [their children] healthy, they really look like everyone else." Dr. Scheun said. "The median lifespan is 47 years old. That doesn't sound great, but it really represents a tremendous triumph for our young people with CF."

The Klotz' are hoping that treatment will continue to progress with research and that treatment will be available for Kamryn in the future. Funding provided by the non-profit Cystic Fibrosis Foundation helps fuel research, and each year the organization hosts the Great Strides Walk to help raise money.  This year the walk is set to take place on May 19 at Millennium Park in Walker.

"It is the 30th year it will be happening, and it is the biggest one in Michigan, and, really, by donating and participating in that walk, those funds go towards research which has come out with things like gene therapy for specific gene mutations," Kelly Klotz said. "[Kamryn] does not have therapy yet, but because of research, there is an expected FDA approval next year for her and for ninety percent of CF patients, which is huge."

People are still able to register or donate for this walk, and according to the Great Strides website, the Grand Rapids area walk has already raised over $12,000