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 Mandy Secrest has just dropped her girls off at Camp INNcredible and they are already shrieking with excitement as they begin a scavenger hunt around The Inn. Older campers are clamoring to hold their little hands with mixed success; Madison, five, wants to lead the way and Emily, two, is happy just to toddle around on her own. As their dad, Will, relaxes out on the Sport Court with other Inn residents, Mandy sets up doctors’ appointments for the girls back in their hometown of Jacksonville, Florida. Nearing the end of their week-long stay, the Secrests settle into a seamless evening routine at The Children’s Inn.  As it turns out, Madison is quite the pioneer, not just for the scavenger hunt but for an entire population of individuals who have been diagnosed with a genetic disorder known as Neurofibromatosis Type 1 (NF1). As part of a protocol for NF1 under Dr. Bridgette Widemann, she is helping researchers and doctors at the NIH understand the effects of an injection treatment, PEG-Interferon, on the tumors along the nerves and on the skin that characterize the syndrome. Madison’s parents first noticed that something wasn’t quite right with one of her eyelids at 18 months of age. Ultimately, an MRI ordered by her ophthalmologist revealed an optic glioma, or a tumor on the nerve that goes from her brain to her eye. Overwhelmed by the extreme costs of treatment and the emotional toll of facing a chronic condition, the family was relieved to hear of the NF1 study through Madison’s Jacksonville oncologist, Dr. Eric Sandler, which she began in March of 2010. Because Mandy is a carrier for NF1 and Emily is also starting to show symptoms, they have been able to enroll in the Natural History study for testing on all the manifestations of NF1.Not only has this shared experience brought the family closer together, Mandy reflects that the supportive environment of The Children’s Inn has helped immensely with facilitating friendships among all of the parents and children who are here seeking treatment. “The Inn community becomes an extended family,” she explains. Mandy proudly wears a rubber bracelet given to her by another family whose child also has neurofibromatosis, and both she and her husband have appreciated the opportunities to connect with Inn residents of all ages, whether over popsicles after a stressful day of treatments at the clinical center or at the circus, which the girls were able to experience for the first time in March using tickets donated to The Inn. The daily Thoughtful Treasures in their mailbox, the Learning Center with its perfectly-sized little computer, and Bingo Nights have also been big hits with the Secrest family. As they prepared to return to The Inn for their most recent visit, the whole family did a “Countdown-to-Vi” (the beloved Inn therapy dog). When they finally arrived at The Inn on a Sunday evening after a harried adventure of flying with two small children, a homemade dinner was waiting for them. “It was so nice that we didn’t have to run to the grocery store or worry about cooking right away. We really appreciate everything The Inn has blessed us with,” Mandy says. In the meantime, the girls will get back to swimming, their favorite activity at home, and look forward to returning to The Inn around Halloween. Update: We would like to join the Secrest family in celebrating some good news they received shortly after their recent visit - Madison's tumor has shrunk 11 percent! We wish them continued progress in their fight against NF1. |
