Reisterstown resident Meghan Flynn’s daughter Mady has a lot on her plate for a toddler.
The 21-month-old sees nurses, a social worker, a physical therapist, a nutritionist and a specialist and takes more than a dozen enzymes a day. She is living with cystic fibrosis.
To help find a cure for her daughter’s disease, Flynn and a team she assembled will walk to raise money for the Cystic Fibrosis Foundation (CFF) at M&T Band stadium on Tuesday, May 17.
When she was just three weeks old, Madyson Rose Boykin-Flynn was diagnosed with cystic fibrosis. To help find a cure, Mady’s mother partnered with Great Strides, one of the CFF’s largest and most successful national fundraising events, for the walk on Tuesday.
“I heard about the walk last year, but I didn’t find out about it until it was too late,” said Flynn, 23. “I knew it was something I wanted to do.”
The Maryland Chapter of the CFF has been holding Great Strides walks each spring at various locations throughout the state since the early 1990s. Baltimore’s M&T Stadium walk of 1.5 miles attracts more than 600 participants annually.
“Cystic fibrosis is life-threatening disease that affects the lungs and digestive system of about 30,000 children and adults in the United States,” according to the CFF, which was started in 1955. In cystic fibrosis (CF), a defective gene and its protein product cause the body to produce unusually thick, sticky mucus, which clogs the lungs and causing infection. It also obstructs the pancreas and stops natural enzymes from helping the breakdown food absorption. There are 1,000 new cases diagnosed each year. The current predicted median age of survival for those with CF is in the 30s.
Throughout the year, 21-month-old Mady visits her pediatrician Dr. Peter Ferra of Reisterstown, and goes to the Cystic Fibrosis Center at John Hopkins four to six times annually. Her appointments last between two to five hours, during which she sees nurses, a social worker, a physical therapist, a nutritionist as well as a specialist. Sometimes her blood is drawn and chest X-rays are taken.
Mady takes four pancreatic enzymes with each meal and three with snacks.
“Since she is too young to swallow these big capsules, I have to break open the capsules and mix the little enzyme dots with apple sauce,” Flynn said.
In all, Mady takes 18 to 21 pills a day. She also uses a nebulizer, which puts mist into the lungs, once or twice daily, but uses it more when she’s sick.
“In addition to her nebulizer, we do her ‘exercises.’ Basically that means, we pound on her chest and back to loosen the mucus in her lungs so then the mucus will not stick to her lungs and cause an infection,” Flynn said.
Unlike other children with CF, who often have other health problems, Mady is within the top 92 percentile for her age. She also reached all her major developmental milestones on time. According to Flynn, Mady seems like a normal, happy, healthy child when you see her, but people do not realize how different Mady’s daily life is with all her special needs.
“She climbs everywhere,” her grandmother, Kathy Flynn said. “The neat thing is that climbing is actually good for her and helps her lungs.”
She is also an avid fan of the ‘Mickey Mouse Club House’, which she watches while doing her exercises in order to take the focus off of the feeling.
“I am participating in the March for Mady for a very simple reason. I want to help save her life,” said Jessica Garnett of Reisterstown, 22, whose daughter plays with Mady weekly.
Mady’s team, “Marching for Mady,” already has about 30 members. Teams come out on May 17, sign in at 5:30 p.m. and then start walking at 6 p.m.. The walk ends at 8:30 p.m. and a Happy Hour will follow with free food, drinks and live music.
“Our team goal is to raise $1,500,” Flynn said.
Donations may be made in cash, check and credit cards. For every dollar, nearly 90 cents go to the CFF.
About one in every 31 people has carried the recessive gene that causes CF, and there are around 1,000 people in Maryland affected with CF, according to Suzanne Nolan, senior director of Development for the Maryland Chapter of CFF.
The latest studies say that a cure for CF may be found within Mady’s lifetime. For more information, or to make a donation in Mady’s name, visit http://www.cff.org/Great_Strides/MeghanFlynn.