Michael and “Shakey” Make Great Partners in the Fight Against Cystic Fibrosis

When she learned that her son had cystic fibrosis, mom didn’t know much about the disease. Today, the Jones family advocates for finding a cure. 

Traci Jones vividly recalls the 9 a.m. phone call from her pediatrician’s office just nine days after her third child, Michael, was born in 2014.

“We have Michael’s newborn screening results,” said the clinician. “We need to see you at 12:30 this afternoon.”

Accompanied by her mother, a nurse, Traci recalls very little from the 40-minute visit with her pediatrician.

“All I remember is that the doctor came in and said that Michael has cystic fibrosis,” says Traci. “I kind of blanked out after that.”

Traci didn’t even know what cystic fibrosis (CF) was, but she and her husband Greg, who live in Blue Mounds, Wisconsin, learned very quickly.

Caused by a defective gene, CF causes a thick, sticky buildup of mucus that affects the respiratory, digestive and reproductive systems. The mucus can clog the airways and trap bacteria leading to breathing difficulties and infections. CF also prevents the release of digestive enzymes that allow the body to break down fat and absorb vital nutrients. About 30,000 people in the United States currently live with CF, including approximately 1,000 newly diagnosed children each year.

Two days after feeling so devastated about their son’s diagnosis, Traci’s family was back at American Family Children’s Hospital for a lengthy sit-down meeting with the CF team.

UW Health Team Genuinely Cares

“We met the pulmonary specialists, the nutritionists, and everyone who would take part in Michael’s care,” says Traci. “We were still getting over the shock, but these people at UW were such a blessing because we knew they genuinely cared, and not just for Michael but our whole family.”

Since Michael turned two, his treatment includes two daily 30-minute sessions wearing a vibrating airway clearance vest that helps shake the sticky mucus out of his lungs. With plenty of sound and two attached hoses to carry the mucus from his chest, the vest – which the family aptly named “Shakey” – made mom a little uneasy at first.

Michael, however, took to Shakey right away.

“Shakey is a huge part of our life,” says Traci. “It goes with us on every trip and we insist on Michael wearing it twice a day to keep his lungs clear. It certainly seems to help.”

With Mom, Dad and Shakey’s help – and thanks to the UW Health CF Team — Michael has been doing well despite the many challenges presented by cystic fibrosis.

“For a 4-year-old boy, Michael works very hard not to let his disease define him,” says UW Health pediatric pulmonologist, Michael Rock MD. “I’m very proud of how hard he and his family are working to keep his symptoms under control.”

Infection-free so far

“Michael has had a few colds,” says Traci, “but he has never had an infection or been hospitalized. He can do virtually everything that his brother and sister can do, so we feel very fortunate.”

Darci Pfeil, a nurse practitioner with the UW Health Cystic Fibrosis Clinic, says Michael is a fun-loving little boy who loves tractors and “anything John Deere.”

“Michael’s parents have done a beautiful job becoming experts in their son’s CF care,” says Darci, “as well as wonderful advocates for American Family Children’s Hospital and cystic fibrosis research.”

Quite impressively, the Joneses have raised more than $470,000 for the Cystic Fibrosis Foundation through an annual golf outing they put on each spring.

Ironically, the Joneses didn’t even have kids when they became connected with American Family Children’s Hospital in 2005, the first year that the hospital held its annual three-day radiothon.

“Hearing so many heartwarming stories about hospitalized kids hit us hard,” says Traci. “We started as monthly donors during that first radiothon because we wanted to give back, not realizing how much we would need this hospital.”

Just one year later, the Jones’ oldest son Jack, now 13, would have the first of six surgeries for a urologic condition that is now completely resolved.

“Two of our three kids have been cared for at American Family Children’s Hospital,” says Traci. “we are so lucky to have such an incredible facility just 30 minutes away. We cannot imagine life without this hospital.”