Meet FOP Connect Mentor Cassie Eckart

Cassie Eckart Stays Positive and Helps Problem Solve

Diagnosed with FOP at the age of nine, Cassie Eckart was fortunate to have someone quickly connect her and her family with the FOP community. She knows the value of building new relationships and strengthening existing ones, so she wants to help others in that process as a mentor with the FOP Connect Peer Mentor Program.

It took a year and a half of tests, x-rays and physical therapy before Cassie got a diagnosis. Though difficult in the moment, the timing meant she received the news in third grade while she happened to have a teacher that was a neighbor of Joann and Bob Snow, Sr., fellow FOP community member Stephanie Snow’s grandparents.

“We were then put in touch with the Snow family and traveled to Philadelphia to meet Dr. Kaplan. We wanted to get involved in fundraising right away and joined the Snow family in two annual fundraising events,” said Cassie. “We were thankful to have another family in the FOP community living so close to us. We helped them put on the annual FOP BBQs and Sit-Down Dinners. I enjoyed donating paintings to the dinners, which raised quite a bit of money for FOP research over the years.” Cassie says getting to meet another family with FOP has been a huge blessing to her and her family over the years. Their support in helping the family get started with fundraising and adjusting to life with FOP is something that she greatly appreciates.

Friendships formed through fundraising as well as her family. Cassie’s faith also became more important as she grew up and her FOP progressed. She’s grateful for a support system she can always count on no matter the challenge. She stays in touch with many friends online through email, text and social media.

Cassie also sings in her church choir and says singing helps her manage the lung restrictions, asthma and chronic obstructive pulmonary disease she deals with. The friends she’s made through her church have also become a great support to her. They’ve helped her through hospital visits for a weak immune system, pneumonia and partial and fully collapsed lungs. When her jaw locked after a flare up, her community was a resource as she struggled to eat and maintain good nutrition.

“I’m a vegetarian, so it was hard finding foods with a lot of protein that were soft or could be blended easily. I lost about 30 pounds in a few months. Not only was I extremely limited in food options, but it took a lot more time and energy to eat and I wasn’t able to eat as much at a time,” Cassie said.

“With help and support from friends and family as well as my research, I was able to have many options and found ways to eat my favorite foods. I have extremely limited jaw mobility and have surprised everyone, including my doctor, with the variety of foods I can now eat with my locked jaw. When there’s a will, there’s a way. I just knew I had to work harder and find solutions to my problems.”

The determination to learn a new normal and fight discouragement are part of what Cassie hopes to give others as a mentor. She’s also ready to pay forward the ways people in her life have shared experiences with her and helped her to problem solve.

“I’m an artist, animal lover, music lover and an overall positive person. I always try to live life to the fullest and I’m willing to try new things,” said Cassie. “It’s so wonderful being able to reach out to the FOP community knowing there are others who may have had the same or a similar situation and receive input and ideas from them.”

To connect with Cassie or one of the other mentors in the FOP Connect Program visit https://www.ifopa.org/peer_mentor_program or email FOPConnect@ifopa.org.

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