Sandee P.

My name is Sandee and this is my story.  I grew up in rural New Jersey on a chicken farm.  However, by the time I came along we no longer raised chickens.  It was a wonderful place to experience childhood.  There were woods to be explored and trees to climb.  Horse farms were a short bike ride away.  I would say it was ideal except for one thing I had NF.  This meant physical limitations and trips to Children’s Hospital of Philadelphia, known as CHOP.  I knew I had NF forever.  My father had NF and passed it down to me.  My first memory is actually having hand surgery at CHOP at only five years old.  I can still visualize the bright green stitches that adorned my right hand.

I excelled academically at school, however, physically was an entirely different story.  Sports and gym class were very difficult for me.  Being picked last for a game was the norm.  Tenacity did not stop me from participating.  I was told I would never ride a bike.  Don’t say never to me because that is a challenge and I will try to disprove it.  I tried and tried to no avail.  Then I had an idea.  The lane that leads up to the farm had a slant to it.  It gave me enough speed that after many bruised and blood knees I was successful.  Voila, I was able to ride a bike and could join the other children on rides!

Now let’s fast forward to high school and adolescence.  It was very difficult, but then again whose teenage years were not difficult.  The neurofibromas began to appear on my skin.  I can even remember the first one I noticed.  I had boys that were friends, but not boyfriends.  I did, however, have a group of very close friends.   One of which is still a good friend today.

College was different, maybe because I went away to school.  I enjoyed my studies and made good friends.  I began to date.  I still spent time in the hospital and NF affected my day to day life as it had through out my life.  Even with all the difficulties I faced I still graduated college.

I always wanted to get married and have children.  I met someone who looked beyond the NF.  We fell in love and married.  My dream of becoming a mother came true when we adopted our daughter.  I decided to adopt because I did not want the NF to be passed down to another generation.  That was my choice and it should always be about choice.

Not only did I get married and become a mother, but I had a successful career.  Actually,  I had two successful careers.  One was in education and the other in the mental health field.

NF has not stopped me from having a happy life filled with family and friends.  The people in my life have always been very supportive.  I cannot say that I am glad that I have NF.  I can, however, say that it has made me very understanding, caring and nonjudgmental of others.