Stories of Beauty Mark Nation
Jessica Bruno’s Story
If you asked me what NF is 5 years ago, like many I would have said “I never heard of it.” Unfortunately, now I am reminded of NF every day that I look at my son Deniro. In fact, those two letters that are so insignificant to many have become my world, my life, and my fight!
Deniro is my second son, born in 2007. He was the perfect pregnancy and at birth, the perfect baby. His one week check-up with the pediatrician was fine except for a couple of small tan birthmarks that his doctor discovered. His pediatrician called them “café au lait” birthmarks or CAL spots, as she began to count them. I noticed the close attention the doctor paid to them and made sure to make a mental note of what they were called.
After leaving the doctor’s office, I remember heading straight home and jumping on the computer to look up café au lait birthmarks. This day marked the day that Google introduced me to Neurofibromatosis. Deformity, tumors, cancer…..the websites just kept spitting out all sorts of terrifying information and I was horrified. I searched and searched until I discovered a site that told me what I wanted to hear. Café au lait spots can be found on all children even if they don’t have NF. This statement got me through the next year and a half.
By this time, my husband Dean and two sons, Domenic and Deniro, were living a typical happy life. We balanced work and play, enjoyed vacations and doing family stuff. Only occasionally did I think about NF. We had a couple of doctors appointments and Deniro was doing great, however we had noticed that he had too few words for his age and didn’t seem as active as he should have been. I immediately got the ball rolling for Early Intervention Services which he was a candidate for. I also took him to see a neurologist because his pediatrician had noticed that the left side of his face appeared to be slightly droopy and she wanted to rule out any muscle or nerve damage. I wasn’t too alarmed though since everything discussed had an explanation and didn’t necessarily signify anything too worrisome.
A month later, Deniro had an appointment at Children’s Hospital in Boston with a neurologist. The neurologist wanted to attribute the slight asymmetry to the way he slept as a baby. I was not comfortable with the doctor’s reasoning and asked if he could have an MRI done since he had the CAL spots and developmental delays (I remembered NF and some of the symptoms children with NF have). She assured me that she didn’t believe Deniro had NF, but ordered the MRI anyway. A few weeks had gone by and Deniro had his MRI. The neurologist called us back, she said everything looked perfectly normal, except the MRI showed a few “unidentified bright objects” on his cerebellum. She said this is common in children with NF and she recommended Deniro see a doctor affiliated with the NF clinic at Children’s Hospital.
At the age of two, Deniro had his first appointment at the clinic and we were told that he does have some common symptoms of NF, but he did not meet the criteria to be diagnosed. In other words, he was suspected of having NF, would be followed in the NF clinic annually, but they just didn’t know and we would have to wait and see if other symptoms developed. I asked a few questions and by the time I left the NF clinic, I had grasped onto the answers I wanted to hear, “there are children who have similar symptoms to Deniro that do not have NF.” Looking back, I now realize my defense mechanisms were coming into play and I only wanted to hear positive feedback and could not face the reality of the negative.
We got through another year, Deniro was turning 3, Domenic, 5 and our children doubled as we welcomed the birth of our identical twin girls, Alaina and Ariana. Life was crazy with 4 children, but great! Deniro continued to show improvement. We went in for his annual visit at the NF clinic not really expecting anything new. I had asked for genetic testing and this time the doctor agreed. He also ordered an MRI since his cheek seemed to be slightly more asymmetrical than last year. The MRI was to be conducted around the same time we received the results from his genetic testing.
As we waited, the summer of 2010 was a busy one…our entire family helped out with the twins. We adjusted to a life with four children, 3 still in diapers! The first half of our summer turned out to be great; we vacationed, visited with lots of family and had fun! As the day neared for Deniro’s MRI, I continued to stay positive only occasionally allowing the “what ifs” to haunt me. The day came for his MRI and we were told the Doctor would have the results by the afternoon. The suspense was killing me. I made my husband call the doctor’s office since I was too terrified of the results and embarrassed that I might break down while talking to the doctor. That night our doctor returned the phone call with news that turned my life upside down. I remember my very first thought, how was I going to survive this. Deniro was officially diagnosed with NF; the MRI showed he had a plexiform neurofibroma in his left cheek. I didn’t even have enough time to do what I did best, which was to deny the negative and hold on to the positive because the genetic testing results were also back and confirmed NF. There was no way I could grasp onto anything that might suggest he doesn’t have NF.
The next few days for me and my family were very emotional. I was in a state of shock, being forced to face what I had so desperately tried to run away from these past couple of years. Several days were spent crying, filled with worry, fear and disbelief that this was happening to my family. What got me through the last couple of years was hope and faith and now, I no longer had it. I couldn’t imagine what would happen to Deniro and all I wanted was to hide in my closet curled up in a ball to escape my reality; but I couldn’t. I had 4 children and a husband I had to pull it together for. My husband reminded me of this. I told him I just needed one more day of doing the bare minimum. That day came, I cried, yelled and had horrible thoughts of not being able to or wanting to get through this, but somehow that day became my turning point. Through all of the emotions I felt, I woke up the next morning and had gained the courage, strength and drive to become my son’s lifelong advocate. All things related to NF became a mission for me, my husband and our family.
We have since been actively involved in fundraising, advocacy and campaigning for NF. I spend endless hours on the computer networking with families across the country, sharing stories and discussing the latest in NF research. My husband has travelled to Washington D.C. in hopes of securing additional funding for research. The children are by our sides, although they don’t quite understand NF, they know that these two letters are important to our family, especially Deniro.
The most recent NF campaign launched to raise awareness is the Beauty Mark Nation. A temporary tattoo that represents the “beauty marks” of NF can be adorned to show support and raise awareness. NF is a permanent part of my life, which is why I opted for the permanent tattoo. I mentioned it to my mom, who mind you at 60 years old has never had a tattoo. She didn’t have to think twice about getting one either.
Our “tattoo day” came and I decided to bring a video camera to the capture the occasion mostly because no one knew my mother (the straight and narrow nurse) was getting a tattoo. I posted a short video on facebook and within minutes both of my brothers were on the phone with her in disbelief. While we were getting our tattoos I knew I was doing it for Deniro and others affected by NF, but after watching the video I realized that my tattoo became my own personal symbol which often reminds me of my mission. Believe it or not, it makes me feel better every time I look at it. I remember the terrifying feelings I once had after learning about Deniro’s diagnosis, but since then, this tattoo reminds me of that turning point, the day I woke up with this sudden surge of strength to fight for Deniro. The fight continues, I do have some bad days where I question “why Deniro,” but most of the time, I glance at my tattoo and remember it symbolizes my “Hope for Deniro!”