Hypothalamic/Optic Pathway Glioma NF1: Abby’s Story

When Abby was 2 1/2, she was diagnosed with neurofibromatosis type 1, a disorder that causes tumors. Her first MRI showed aggressive glioma of the optic pathway, which impaired her vision.

The tumors cannot be removed, so they must be closely monitored with regular MRIs and treated to keep them stable. In 2014, when she was 8, one of her routine screenings revealed a hypothalamic tumor in her brain, also NF1-related. 

When it was clear that the brain tumor was growing, Abby started chemotherapy. Treatments had been going on for nearly a year when she developed two serious allergic reactions. She then began to receive a more targeted form of chemotherapy. “Abby has three siblings, and managing doctor visits, activities, school and life in general is challenging,” says her mom, Melissa. “We are so fortunate to have such wonderful support from family and friends throughout Abby’s journey at CHOP. It’s a team effort, and she has a great team.”

Abby Happily, Abby could continue to do a lot of arts and crafts, which she loves, and at the beginning of summer, she was finally able to resume one of her favorite activities: The family lives in Cape May Court House, NJ, and Abby is “a huge shell collector,” says Melissa. In her first few trips to the beach, she gathered bucketfuls. In June, thanks to the Make-a-Wish Foundation, Abby and her family went to Disney World, their first vacation in three years.

Perhaps the best way to describe Abby is that she has a huge heart. “She’s compassionate — very in tune to what other people need,” explains Melissa. At Abby’s first chemotherapy appointment, a CHOP staff member took her to a toy chest, and the toy she picked out helped comfort and relax her. As a result, Abby became determined to make sure that other kids getting chemo always have plenty of toys. She began a toy drive in her school and community. “Our garage is full!” says Melissa. “Every trip to CHOP, we bring as many as we can carry.”

Abby is a Patient Ambassador for the Parkway Run & Walk, which takes place on Sunday, Sept. 25. The event is the largest annual fundraiser for the Cancer Center at The Children’s Hospital of Philadelphia. By walking and running, Abby, along with her friends and family, will be giving back to CHOP in yet another way.

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