Paula Matters knows she's biased, but she’ll say it: Her 10-year-old daughter Marlia Matters is “absolutely amazing.”
“She is as unique as her name, and she is just as pretty as her name,” Paula Matters said from her home in Garden Spot, Pa. “I think she’s absolutely beautiful, and every now and then people will stop us and say, ‘Wow, she’s pretty.’”
It could be Marlia Matters’ eyes that catch people’s attention. Rimmed with a bluish tint, it’s easy to fall into the green-hued pool of color surrounding her pupils.
It’s rare then, that when people meet Marlia Matters they know she has cystic fibrosis, which is a life-threatening disease. Because she’s so active, her mother said, it’s easy to miss. Despite waking up every day at 5 a.m. to do breathing treatments and swallow a plate full of pills before eating breakfast, Marlia Matters goes to school, plays basketball and takes dance classes.
“When my husband and I had her and we found out about CF, we made a pledge to each other that we weren’t going to put CF first,” Paula Matters, 32, said. “We were going to make her life as normal as possible.”
“But [cystic fibrosis] is a tricky little bug,” she added. “What’s difficult to understand is that it’s a very dangerous disease and can take you out of here in the blink of an eye.”
Marlia Matters is one of the children who will benefit from the Narberth Cystic Fibrosis run this year, which will begin at 9 a.m. on April 21 at Narberth Park. In its 16th year, the annual five-mile run works to fulfill wishes for children who deal with a disease that hinders breathing and affects the digestive and reproductive systems. Up until this year, funds from the run have made 80 children’s wishes a reality.
During its first year, funds from the run fulfilled one wish. This year, the run is expected to fulfill five or six, including sending Marlia Matters and her family to Paris where her great-grandparents were married.
Matt McCloskey and siblings Ame Austin and Molly McBryan grew up in Narberth and organize the run every year to preserve the memory of McCloskey’s St. Margaret’s classmate John Nardi, who died from cystic fibrosis in sixth grade.
“We’re trying to raise awareness for the disease, and our mission is just to put a smile on a child’s face,” McCloskey said. “Growing up I had a mild case of cystic fibrosis, and I’ve seen how it can take its toll on other children.”
McCloskey is in the process of creating the Take a Breather Foundation as a vehicle for the run and to expand the number of opportunities he and his siblings have to positively impact the lives of children who live daily with the disease.
Currently, McCloskey, his siblings and committee members associated with the run stay in contact with social workers at three major cystic fibrosis centers: the Children’s Hospital of Philadelphia, St. Christopher’s Hospital for Children and the Bristol-Myers Squibb Children’s Hospital at Robert Wood Johnson University in New Jersey.
The social workers nominate children who have had particularly tough years and wouldn’t be able to afford the wishes they request if chosen. The child also writes a letter to the Narberth Cystic Fibrosis Run committee explaining what their daily lives are like and why they want the wish.
“Marlia took two hours just to write her letter,” Paula Matters said. “She wrote it six different times, and kept saying, ‘Mommy, it has to be perfect.’”
On top of her normal doctors appointments in New Jersey, Marlia Matters spent about 10 days in the hospital over the summer after contracting pneumonia. Two years ago, her great-grandmother Xaviere Matters passed away, and before she died, she began speaking French again. Marlia began to adore something as much as her Mimi: To her, the language was beautiful.
“Before she died, she told Marlia, ‘If you can ever get there, get there,’” Paula Matters said of Paris.
In June, Marlia, Paula, her father Jason and younger sister McKenzie Matters will all fly to France, where they will spend Father’s Day.
“I’m just in awe,” Paula Matters said. “All of this is possible because of this run. They’re making her dream come true. She’s truly going to be able to appreciate this.”
Still, Paula Matters emphasized making Marlia’s life as normal as possible remains a priority, which includes being upfront with her growing 10-year-old.
“A lot of times during their teenage years, children with cystic fibrosis get so sick and tired of doing their meds and start rebelling by not taking them, which makes them sick so much faster,” Paula Matters added. “So when she’s feeling woe is me, I’ll be able to say, ‘You wouldn’t have been able to go to Paris without this disease.’”
For more information on how to register for the Narberth Run, visit the website. Registration before April 1 is $30 and $35 afterward. It will take place at 9 a.m. on April 21.