Mariana McConnine, commonly known as “Mare” is a 19-year-old Deaf Studies Major at Towson University. She has lived her entire life with Cystic Fibrosis, a genetic disorder that mostly affects the lungs. This semester she fell ill and was hospitalized where she learned she needs a lung transplant. However, this won’t be Mare’s first go around. She received a double lung transplant in 2014 due to complications from her Cystic Fibrosis.
Mare’s biggest fear is people treating her as the “sick kid” so most people are not aware of her health condition. It is important for her to build relationships genuine friendship and not sympathy.
During Mare’s spring semester Freshman year, she joined the Delta Phi Epsilon sorority, who does philanthropic work for The Cystic Fibrosis Foundation country-wide. “I immediately felt comfortable telling my sisters about my health,” said Mare “they were understanding and didn’t define me for it.”
Soon after joining Delta Phi Epsilon, she met Kayla Hester at a party. They bonded over Mare’s tattoos that relate back to her journey with CF. Later in the semester, Kayla became Mare’s sorority “big sister.” “I actually didn’t want to be a big until I met Mariana,” said Kayla. They have been attached at the hip ever since.
After Mare learned how sick she became this semester, she feared to tell Kayla because she knew she would become distraught. While Kayla was upset, she used her worry in Mare’s best interest by developing a Children’s Organ Transplant Association (COTA) fundraiser in honor of “Mighty Mare.”
The Children’s Organ Transplant Association (COTA) helps children and young adults like Mariana who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults.
“The Mighty Mare campaign is something I kind of created with my roommates, one of which is another sister in DPhiE. It really started as wanting a short little phrase to use to get things circulating around social media, kind of like a hashtag,” said Kayla. “We brainstormed for hours.”
It is important because Cystic Fibrosis is considered an orphan disease by the government, meaning that not enough people are affected by it for the government to consider funding it.
Since COTA has been at Towson, it has held two tabling events and has raised $1,365 of it’s $20,000 goal through the direct donation web link. The tabling events gave information on Mare and her fight with CF. There is also Mighty Mare merchandise available for purchase where all proceeds with benefit Mariana’s awaited lung transplant.
Kayla is a junior, and my major is Family & Human Services on the Child Life track at Towson. When asked how much time she dedicates a day to COTA, she said, “The Facebook page tab is always open. I never close it.” Time management is key for Kayla, and she explains how the first weeks of fundraising were brutal for her while at the same time trying to maintain her grades. COTA has become her life now, and she already has plans for a 5k and a restaurant fundraiser in the near future. She describes this experience as “humbling.”
“It’s showed me how hard I can love and how far I’ll go for someone I care so much about,” said Kayla.
When the Mighty Mare campaign was presented to Mare herself, she was still in the hospital. “My doctors had me gassed up when I heard about it, so I actually thought Kayla had legally changed my name to Mighty and my last name to Mare,” she said.
Throughout all the hardships Mare has been presented with throughout her fight with CF, she still keeps a positive attitude and calls her friends “soft” when they get in their feelings expressing their love and worry for her.
“Whenever anyone worries about her, she reassures them that she is fine and I think that is an amazing quality to have. Not everyone can be as strong and happy as she has been through everything,” said Karen Dávila, Mare’s roommate.
Mare explains that it is easy to stay in good spirits with a support system like the Mighty Mare Campaign. “If you guys can do all this for me then I can get better for you guys,” she said.
As of right now, Mare gets to be at home with her family in Rockville, MD. There she will wait for a new set of lungs and work on becoming strong and healthy again. Her short-term plan consists of returning to Towson to finish her degree.
When asked about her long-term plans, she replied, with no hesitation, “I have no idea maybe I’ll adopt a dog, or maybe I’ll adopt 27 dogs.”
That is the Mariana everyone has learned to love.