Personal Stories

Liz & Rachel Campana

My name is Liz and I have a 15 year old daughter, Rachel who has NF type 1.  It’s hard to believe it’s been nearly 14 years since she was first diagnosed. When the doctors told us Rach had NF, and we started to learn about everything that COULD happen to her, I was so scared.  As a Mom, over the years, the hardest part was learning to cope with not knowing how mild or severe her NF would be and how to manage my anxiety about her future. I wanted my family, including her non-affected sister, to lead as normal of a life as possible.  NF is just one aspect of Rachel’s life.  She has been taking dance classes since she was three and has played softball for our park district league for many years as well. She never made the All Star team and she is first to admit “grace” is not her middle name, but she has enjoyed these activities and that’s all that matters to us. 

Right from the beginning, what helped us cope immensely was our involvement with our local NF organization, NF Network Midwest.  When Rachel was younger we hosted several plant sales at our home raising money for research and NF awareness in our community.  As a result of these plant sales, we met other NF affected families and we started a local support group. We have made friendships and have stayed well informed by being connected to NF Network Midwest. I have met adults with NF who are leading normal lives; who are married, work and are happy.  This has always given me HOPE for my daughter’s future.

Rachel will also be attending Camp New Friends this summer for her second year. This camp is held annually in Virginia for kids with NF.  She absolutely loved attending last year and met many new friends. I know she met kids with more struggles than she; but she returned with a healthy growth in her knowledge of NF and she learned to be more independent. This year she will be a CIT (counselor in training) and is very excited!

Like many families affected by NF, life can be a roller coaster.  Our annual trips to the NF clinic have always been a comfort to us as Parents, and to Rachel too. They are the NF experts and have always been just a phone call away. When there’s pain, there’s always that worry. We have gone through those scary periods as well – ultrasounds, MRI’s and a surgery.  But after recovery, the non-NF aspects of life go on.  I always tell Rachel that “everybody has something, no one is perfect”. She just happens to know what she has (NF). 

I have met adults with NF who are leading normal lives; who are married, work and are happy.  This has always given me HOPE for my daughter’s future.

Wishing Melissa Shea Malerba the best as she once again runs the #BostonMarathon for #NFincNE. You make us proud! #BostonStrong #Boston