Stories of NF: Lucy G.

At 2 months old, we started noticing cafe-au-lait spots on Lucy’s chest and legs. Her pediatrician, who didn’t know much about NF, but knew we should see a specialist, suggested we go to Johns Hopkins genetics department. By 6 months old, Lucy had a confirmed diagnosis of NF1 through genetic testing.

At 7 years old, Lucy is fortunate in that NF doesn’t impact her daily life much. She has one plexiform tumor on her chest that is hyper sensitive and noticeable, but she calmly answers with facts when people ask her about it. She has many more doctor appointments than the average 7-year-old (she’s had two sedated MRIs in the last three months), but she has a positive attitude about it and always looks forward to a day with mom or dad away from school and her twin brother.

We know Lucy will need surgery during adolescence on her chest for plexiform removal and reconstruction. As her mom, I’m thankful we can hold off until Lucy is old enough to make informed decisions about her own medical care.

Lucy is in second grade. She loves gymnastics, hiking, sewing, and being social. She has a creative side that recently came to life and she has spent many hours erecting forts in the basement and building cardboard houses (complete with lights, windows, doors and slides) for her stuffed animals. She also recently invented a new board game called “Math Run” to help kids with their addition and subtraction skills. Unicorns and “mostly any animals” make her happy as she wants to be a vet when she grows up.

As far as the future goes, as with all NF patients, we don’t know what challenges lie ahead, but we will cross each bride as we encounter it and know that Lucy has an amazing support system.

We are trying to enjoy life as much as possible, stay educated on the latest NF developments, and do everything we can to fund and support research and development in NF treatment. Being a part of CTF and the Volunteer Leadership Council has introduced us to such an amazing network of fellow NF families. It is a community who can always answer questions, commiserate over our frustrations, provide advice and assistance, or celebrate good news. In addition to our NF community, we are so grateful to our friends and family who have helped our Team, Lucy’s League, raise over $15,000 for CTF at NF Walks and 5k runs over the last 5 years!