Nineteen-year-old Maddi Bertrand of Glen Ellyn is a leading voice in a somber new video by The New York Times, which notes that 11,000 Americans will die this year while waiting for organ transplants. Chicago's Lurie Children's Hospital will give Maddi a Hope and Courage award Wednesday for her wide range of contributions, including her advocacy efforts that helped lead to a change in the legal age to buy tobacco products from 18 to 21 in Illinois as of July 1.
She's been raising money for the Cystic Fibrosis Foundation since she staged Maddi's Marvelous Mayfair fundraiser at the age of 7. She's successfully lobbied for smoke-free bike paths and parks. She never turns down a chance as a speaker to raise funds and awareness on behalf of people with cystic fibrosis.
"And I will for the rest of my life until a cure is found," Maddi says. Then she coughs a dozen times into a paper towel, grimaces, removes the oxygen tubes from her nose to blow into a tissue, and pauses for nearly a minute to give her body time to catch up. CF is a life-shortening, progressive, genetic disease that affects the pancreas and causes a thick mucus to form in the lungs.
"I'm definitely sicker than I was a month ago," she says. The attention and awards are nice, but what she really wants is a new set of lungs.
Born in Pennsylvania, one of the few states at the time that tested newborns for cystic fibrosis, Maddi got diagnosed and started treatment earlier than many CF patients, says her mother, Linda Bertrand.
"When I was in elementary school and middle school, I could do sports," Maddi says, noting that she even played the rough game of lacrosse. "Whenever I'd join a team, I'd get sick, end up in the hospital, and then the season would wind down."
She plays the flute and piano, did martial arts with her brother, and was healthy enough to be a section leader in the marching band and take on roles in a couple of plays during high school.
"I've gone from this tiny backpack to a tank because I've been needing more oxygen," says Maddi, whose senior photos featured one with the oxygen tubes and one without. She takes a couple dozen pills each day, and undergoes three or four daily lung treatments. In spite of missing weeks of school, she made it to prom and graduated from Glenbard West High School in 2018 with the rest of her class. On Feb. 2, 2018, she went on the lung transplant waiting list.
"She's a very smart, determined and wonderful young woman," says Lisa Mulvaney, coordinator of the creative arts program at Lurie Children's, and the person who recruited Maddi for the Lurie Children's Kids Advisory Board in 2013. "From Day One, she was really invested in this group of kids and about making the hospital even better. She never wants to miss a meeting."
Maddi dragged her oxygen tank onto a Metra train and ordered a ride service once she got into Chicago to make one board meeting. Because CF patients can get sick when near other CF patients, Maddi is the only representative of that disease on the board, which has members from age 12 to 19.
"She really displays such hope and such courage," Mulvaney says. "She wants to give as much as she can."
As a freshman in high school, Maddie became the first CF patient to complete the Xtreme Hike: a one-day, 21-mile hike with her mom through the hills of the Manistee National Forest in Michigan. Maddi has helped host three proms for the inpatients at Lurie Children's. She attended the first International Children's Advisory Network summit in Washington, D.C. Her mother recalls how Maddi didn't get a chance to meet with then-U. S. Sen. Mark Kirk of Illinois. "But I recognized his wheelchair at the airport," says Maddi, who walked up, introduced herself, and had a nice chat about the importance of funding research for CF and other diseases that affect children.
The New York Times video featuring Maddi was produced by Kendall Ciesemier, an original member of the Lurie Children's Kids Advisory Board from Wheaton, and a member of the 2010-11 Daily Herald Leadership Team. At age 11, Ciesemier founded Kids Caring 4 Kids, which helps children in Africa impacted by AIDS. Her work was recognized by then-President Bill Clinton and Oprah Winfrey. Born with a rare liver disorder, Ciesemier was the recipient of two liver transplants.
"I want people to know that donating organs is so important and that I wouldn't be alive without the generosity of a stranger," Ciesemier says via email. "I take the gift that someone gave me very seriously and I focus a lot on paying it forward. … I like to believe that I can give people hope."
Maddi says she maintains her hope.
"Of course, I want new lungs, but I'll wait as long as it takes. I'm happy," says Maddi, who notes the transplant wait is tricky. "I have to be really sick to be at the top of the list, but I have to be healthy enough for the surgery. This is so crazy."
She gets support from her brother Zach, 16, and sisters Grace, 13, and Gabbi, 11, but Maddi says her strength comes from her Christian faith. "God's in control," she says. "Whenever I'm down and don't know if I can do this, I lean on God. I know He will get me the right pair of lungs."
She's learning to play a new religious song on the piano, with the lyric, "I will fight for you." Transplanted lungs would be free of CF, but recovery from the surgery can be grueling, and requires lifelong medications and care. Imagining her life with new lungs and the ability to breathe, Maddi sees herself going to college and becoming a trainer who works with dolphins at Clearwater Marine Aquarium, the Florida not-for-profit whose care of sick and injured marine animals was made into two "Dolphin Tale" movies. Anchored close to home while she waits for her transplant, Maddi also dreams of traveling to Florida, New York, Hawaii and California, and doing some of those things that CF denied her.
"When I get these new lungs," Maddi says, breaking into a sly grin, "I want to live a little first."