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Cakes and Cecilee’s Courage

By Staff | Aug 16, 2013

Cecilee Roper was just 2 years-old when she was diagnosed with neurofibromatosis, a non-life threatening genetic disorder that has required more than a year of chemotherapy treatment and weekly trips to the doctor.

Last weekend she was honored at the Shepherdstown Fire Hall, as part of the Cupcakes and Courage fundraiser held by local organization, Full ‘Steem Ahead.

“She has been courageous,” Teresa Holmes-Lindsey said of Cecilee, who she chose to honor along with Delores Nelson Clark, a friend and Full ‘Steem Ahead advocate, who recently succumbed to her own battle with lung cancer.

Formerly known as the “Stomp Out Caner,” event, -one of four the mentoring and life-coaching organization holds each year as a community support, Holmes-Lindsey said that Cupcakes and Courage celebrated Cecilee’s unique fight.

“She shows her courage to everyone. She inspires everyone,” she said.

According to her mother, Robyn Roper, Cecilee’s disorder –inherited from her father Chris, usually presents as superficial tumors of the skin, though it can occasionally result in what is characterized as “catastrophic type tumors,” on the brain or heart.

Robyn said that when Cecilee’s left eye began to bulge, she took her to their local optometrist, before being referred to a specialist.

Just days before her third birthday, Cecilee was admitted to Children’s National Medical Center in DC and was found to have two large tumors growing on both sides of the optic nerve in her brain.

With potential risks including total vision loss or even the loss of one or both eyeballs, Cecilee’s treatment began right away, at a cost of roughly $20,000 a month, according to Roper.

“We do have insurance,” she said, explaining that while a large portion of their costs are covered, travel, insurance deductibles, medical co-pays and missed workdays still take a financial toll.

“It’s expensive to make sure she’s taken care of,” she said.

The Cupcakes and Courage fundraiser earned the family $200 toward Cecilee’s medical expense fund and raised another $200 in honor of Mrs. Nelson Clark, to go toward the Lung Cancer Alliance research charity.

Robyn said that while the event was helpful financially, it was also heart warming and inspiring for her and her family.

“It was just really good to know that there are really great people in the world who are willing to help their neighbors,” she said.

Choosing to take home the largest cake donated for the event, Robyn said Cecilee had a great time playing with other children and meeting supporters.

“She had a lot of fun,” she said.

Robyn said she posts updates about Cecilee’s journey on a special “Team Cecilee” Facebook page and further donations for Cecilee can be made by contacting the family there.

“For the rest of her life shes going to have to be followed pretty closely,” Robyn said of Cecilee’s journey.

The Roper family remains positive nonetheless.

“We’re freezing the cake to save for a ‘Chemo is done’ celebration in March hopefully,” Robyn said.

More information about Full ‘Steem Ahead and their work can be found by visiting www.facebook.com/FullSteemAhead.