Father of cystic fibrosis patient plans concert, silent auction for Children’s
If you asked Charlie Hopper if the birth of his son was hard, you’d be off. Way off.
“To say it was difficult would be inaccurate,” Hopper said. “Any time you’re confronted with something your child has that could shorten his life shifts your perspective. We’ve done our best to take his diagnosis in stride, and the help of the team at Children’s has made that possible.”
A week after Edison Hopper was born last year, he was diagnosed with cystic fibrosis (CF). He has been treated at Children’s Hospitals and Clinics of Minnesota ever since. It was a diagnosis that will forever impact the Hopper family. Parents Charlie and Becky have not only accepted it but also pledged to help other kids like Edison and all kids cared for by Children’s.
CF is a life-threatening genetic disease that primarily affects the lungs and digestive system. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus. It clogs the lungs and leads to life-threatening lung infections, as well as obstructs the pancreas and stops natural enzymes from helping the body break down food and absorb vital nutrients.
After Becky became pregnant with Edison, she learned she was a CF carrier. As a result, Charlie was tested and also found to be a carrier. When both parents are carriers, children have a 1-in-4 chance of having CF. It wasn’t until after Edison was born that they learned his diagnosis.
“Emotionally, it was difficult after Edison was born, but we got to a point where everything leveled out, and it got easier and easier. We don’t know any different,” Hopper said.
Edison receives daily treatment. He takes 40,000 units of enzymes with every meal to help him maintain body weight, Hopper said. He uses a nebulizer twice a day and wears a vest during treatment to help loosen the mucus in his lungs.
He visits Children’s, specifically Dr. Brooke Moore at Children’s Respiratory and Critical Care Specialists (CRCCS) every three months for checkups. He does an annual visit with his whole CF team (doctor, nurse, dietitian, social worker, and respiratory therapist). To date, he has been healthy and hasn’t once been hospitalized.
Since Edison was born, there have been many promising developments for people with his diagnosis. Life expectancy on average for a person with cystic fibrosis is just over 37 years. Kids born today with it should live into their 50s, on average, Hopper has learned.
“Part of why CF has advanced is because of places like Children’s,” he said.
Charlie and Becky are expecting their second child next year. Because they’re both carriers of the defective gene, their next child could have cystic fibrosis, too.
“We obviously don’t want our next child to have CF,” Hopper said. “But in the event our unborn son has CF, we’ll know how to manage it.”
Hopper wants to raise $15,000 yet this year for Children’s in honor of his son and the thousands of other kids for whom Children’s cares.
“Everything that Children’s represents is something bigger than us as individuals,” Hopper said. “They go above and beyond.”
To help raise funds for Children’s, Hopper has organized a benefit concert, featuring national touring band Blitzen Trapper at the Fine Line Music Café on Dec. 12 presented by 89.3 The Current and McTerry Music. Local standouts Farewell Milwaukee, Bigtree Bonsai and Old Desert Road will also perform. Tickets are $25 in advance, $30 at the door and $50 for VIP (balcony access and $20 bar tab); doors open for the concert at 7 p.m. Tickets are selling fast and can be purchased here.
There will be a pre-event silent auction sponsored by IPR directly next door to the Fine Line at 300 N. First Ave. from 4-7 p.m., featuring live acoustic music by local musicians David and Zach Young (Down and Above, Going to the Sun) and Ray Smart (The Attley Project, Meridian Incident). Admission to that event is $10 and includes free food and drinks, as well as two complimentary raffle tickets for prizes to be given away after the concert at the Fine Line (need not be present to win). Tickets can be purchased here. People with tickets to the concert will be admitted free. If you cannot attend either event but want to support the cause, give today.