“It was really hard,” says IU Health Arnett nurse Lynzie Primeau, about learning of her son’s cystic fibrosis diagnosis. “We had been home for around 10 days when we received a call from Dr. Criswell (pediatrician Marshall Criswell, MD, FAAP). Luke’s newborn screens flagged for two mutations.”

Cystic fibrosis (CF) is a genetic condition that affects a protein in the body. People who have cystic fibrosis have a faulty protein that affects the body’s cells, tissues and the glands that make mucus and sweat. CF leads to severe respiratory and digestive problems as well as other complications such as infections and diabetes.

“You come up with all kinds of excuses on why the test is not right,” says Primeau. “As a nurse you become hyper-focused on everything with your baby.”

Primeau took a break from nursing to focus on Luke, who she describes as the most outgoing, friendly loving and lovable human being.

Luke, now a kindergartener, has been fairly healthy, with his major issues being nasal polyps. He has had five sinus surgeries and does a sinus rinse twice a day, which he has figured out how to do on his own.

“He loves getting out the really big boogers,” says Primeau with a laugh.

Primeau credits the CF clinic at Riley Children’s Health for pushing Luke’s independence. He is able to put on and plug in his vest twice a day which inflates and vibrates to loosen the mucus in his chest. He knows all the names of his various medications.

Primeau shares that sending him to school was scary due to all the germs. When he catches the latest bug, it takes him longer than most to recover.

“He has missed a lot of school, but has done better than we expected,” says Primeau, adding that Luke is right on track.

His independence streak allowed Primeau to return to work in July 2021. She works in the intensive care and progressive care units at Arnett Hospital with pulmonary physicians and patients — which she shares is more interesting because of Luke.

The best part of her job is seeing patients improve and leave the ICU.

Luke will turn six soon, which means he will be able to start a new medication Primeau says “is supposed to be the miracle drug for CF.”

“We have been practicing our swallowing skills, so he is ready,” says Primeau.

On Sunday, May 7, the family will be walking in the Great Strides event for the Cystic Fibrosis Foundation. The walk begins at 11 am at Victory Field in Indianapolis.

“It has been a great privilege for me and my family to learn about cystic fibrosis through our relationship with Lynzie, Luke and their amazing family,” says Ashley Lewandowski, IU Health Arnett human resources specialist. “Prior to meeting Luke, I had no knowledge of CF but through our friendship, we’ve learned so much about this illness, its impacts and available treatments. My family looks forward to the CF walk every year, and it’s a great opportunity to teach my children about the importance of fundraising and research that helps many people, like our friend Luke. I am inspired by Lynzie’s efforts, bravery and advocacy on behalf of Luke and all the other families impacted by CF.”

If you would like to support Luke’s League team, visit: https://fightcf.cff.org/site/TR?px=4063528&fr_id=9602&pg=personal.