Tom and Beth Monaweck of Spring Lake, along with their friends and family, are gearing up for their second Great Strides Walk and the first Mabel Open golf scramble to raise awareness about cystic fibrosis. The family’s efforts stem from the diagnosis of their now 1-year-old daughter, Mabel.
Within a few days of going home from the hospital with their newborn daughter, Tom and Beth Monaweck received a call informing them that Mabel’s screening test indicated she has cystic fibrosis.
Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. More than 70,000 people worldwide live with cystic fibrosis, according to the Cystic Fibrosis Foundation.
The diagnosis came as a shock because nobody in their families has cystic fibrosis, Beth said.
Tom and Beth learned they are carriers of the mutated gene.
According to the Cystic Fibrosis Foundation, if parents both carry the defective gene, there’s a 25 percent chance the child will have cystic fibrosis. There’s a 25 percent chance the child won’t be a carrier and won’t have it, and a 50 percent chance the child will be a carrier and not have it.
Mabel’s diagnosis brought with it a year of learning. Beth and Tom used Mabel’s birth announcement as a way to tell their friends and family about cystic fibrosis.
As a newborn, Mabel went to Helen DeVos Children’s Hospital on a monthly basis to have her weight and height checked.
Mabel, who weighed 10 pounds, 5 ounces at birth, has remained consistently in the 90-percentile for weight and height growth, Beth said.
If Mabel gets a lung infection, it requires an automatic hospitalization.
Now that Mabel is 1, she visits the Grand Rapids hospital every other month. Depending on her appointment, visits are usually two- to three-hours long.
Mabel might see a dietician, physical therapist, occupational therapist, researcher, geneticist and a psychologist who offers services for stress related to living with cystic fibrosis, depending on the appointment. Mabel also has a throat culture done to see what type of bacteria is in her throat, and a chest x-ray to see her lungs.
Since Mabel doesn’t absorb enough nutrients, she’s on a high-fat, high-calorie diet, which includes extra butter on vegetables and added salt, Beth said.
Mabel also has to take a prescription medication every time she eats because part of her digestive system is partially blocked because of cystic fibrosis, Tom said.
About 20 minutes twice a day, Mabel wears a special vest that vibrates and helps loosen the mucus on her lungs, and she also uses an inhaler. She also uses a nebulizer once a day.
Since Mabel’s diagnosis, the Monaweck family has worked to raise money and awareness for the Cystic Fibrosis Foundation.
Team Mabel raised more than $8,800 in their first year participating in the 2017 Great Strides Walk. Prior to the walk, the Monawecks hosted a brunch for participants for Team Mabel, and about 80 people attended.
For their efforts, Team Mabel received the Top Rookie Team award at the 2018 Cystic Fibrosis Foundation Michigan chapter reception.
While Team Mabel is in fundraising mode ahead of the May 20 walk, they’re also working on the Mabel Open golf scramble at Pigeon Creek Golf Course in June.
Tom said the golf outing wouldn’t be possible without their friends, Josh and Stefanie Herder, who graduated from Spring Lake High School in 2002 with Beth.
Around 2006, Tom and Beth met at an event Josh hosted in Grand Rapids, Josh said.
Tom and Beth are “basically family,” Josh said.
After hearing about Mabel’s diagnosis, Josh researched cystic fibrosis to learn more.
“After finding out cystic fibrosis (CF) was incurable and all the complications children with CF can have, I knew we had to do something to help,” Josh said. “Either help Beth and Tom directly or somehow raise money for research.”
Josh said he though a golf scramble would be a way to have fun while raising money and awareness about cystic fibrosis.
Within two weeks of opening registration for the Mabel Open, it closed because it was filled with 25 teams. Josh said the community’s support “has been amazing.” By holding the Mabel Open, he said they hope to raise money for research.
“While the event bears Mabel's name, we are donating all the proceeds directly to the Cystic Fibrosis Foundation,” he said. “I am optimistic that because of our efforts and donations, there will be a cure for this disease in Mabel's lifetime.”
Local businesses have also donated prizes and become sponsors for the event.
Although the Mabel Open is closed for new teams, there are sponsorship opportunities available. Anyone interested in sponsoring the Mabel Open can email firstname.lastname@example.org.
Since May is Cystic Fibrosis Awareness Month, Grand Armory Brewing in Grand Haven plans to select a beer and donate money from that beer’s sale to the Mabel Open, Tom said.
Another friend’s employer is also matching funds up to $1,000 that employees raise for the 2018 Great Strides Walk.
While cystic fibrosis is serious, Beth said they need to have a positive outlook.
With family, friends and the community’s support, she said it makes the challenges feel more achievable, and noted that her sister helps a lot, as do other family members.
“It’s hard to think about all the support and not get choked up,” Tom said.