Mara’s Story:
She’s a bit of a daredevil. That’s how Kathie and Paul LeRoy describe their 13-year-old daughter Mara. It’s definitely accurate considering Mara has been an adaptive downhill skier for eight years, has played power soccer with her wheelchair, loves summer camp, and recently went indoor skydiving after thinking how fun it looked.
This desire to try new things means plenty of organizing of schedules on the part of her parents. However, it also means taking into account the accessibility of locations and activities for her wheelchair. Mara received a dual diagnosis of epilepsy and cerebral palsy shortly after birth.
The additional challenges she faces have hardly kept her from doing the things she enjoys, and they’ve also brought her family together in ways they maybe otherwise wouldn’t have. Mara’s grandmother and aunt have both attended Family Camp with her, which is one of three camps offered by EFMN. Family Camp is just one day long, and tailored for youth with epilepsy who have additional accessibility, medical, developmental, social, or emotional needs.
“It takes some planning to find accessible camp options that are offered nearby and of interest to Mara. Family Camp has been a nice way for her to bring her grandma and aunt along so they can all spend the day together and try some outdoor and artistic projects,” says Kathie.
Mara’s favorite Family Camp activities are archery, rock climbing, and going down the black hole slide. “It is a bit of a challenge to get around outdoors, but if someone hasn’t been there before they should try it. The camp counselors help people and it’s fun,” says Mara.
Kathie and Paul first came to EFMN through Parent Connect Groups, which opened the door for conversations about youth programs and accessibility. Mara has also enjoyed some of the Shining Star events, like family bowling, over the years.
“Looking back now, they were the first family I really worked closely with about the challenges they face and how their family can participate. They really influenced how I thought about and shaped our family programs,” says Program Director Nikki Baker.
Accessibility can be something that gets overlooked when it’s not part of your daily life. When dealing with medical needs and using a wheelchair, you are forced to become a strong advocate for yourself. Mara has always been an involved partner in her medical care and found enjoyment when after multiple leg and hip surgeries she was able to do machine-assisted walking therapy. She’s currently in a good place with managing her epilepsy, and gets straight to the point when talking about how it affects her to this day.
“Barely. I take medicine,” says Mara.
