Zoe Comiskey is 16 years old and lives with NF1. She is currently working on her Girl Scout Gold Award. She developed her project in conjunction with her doctors at Children’s Hospital of Philadelphia. Zoe will be meeting with newly diagnosed patients and their families to share her story and help them feel better about this new world they’ve now entered.
Colin was 6 years old when he was diagnosed with NF1. Colin is now 10 and is a diehard NY Jets and Michigan Wolverine fan. When he is not outside playing with his friends, you can usually catch him playing Madden 18 on the X-box. He is also a thrill seeker and will go on just about any ride out there. Colin does have to have annual MRIs and eye exams to monitor developing tumors, but luckily, he continues to live a normal child's life, playing baseball, swimming, and spending time with his friends.
I was diagnosed with NF1 at 22 months old. I take it one day at a time. If I’m hurting I try to keep going on with it. My husband keep an eye on my tumors making sure they haven't grown none and I keep my appointment with my doctors.
Alex was diagnosed with NF1 when he was a couple of months old. He started developing cafe au lait spots and we were sent to Emory Genetics in Atlanta, GA. He had his first MRI when he was 6 months old and it showed the UBOs (unified bright objects); later he developed lisch nodules.
The following interview was conducted on November 13, 2017 with Jim Hubbard, a school psychologist and counselor, by Kate Kelts, RN, BSN, patient support coordinator for the Children’s Tumor Foundation. Jim has 33 years of experience as a school psychologist working with children and families, as well as living with NF1 himself. This resource is meant to serve as a resource for parents beginning the process of advocating for their child’s education.