Ed note: During May, NF Awareness Month, we are posting stories of individuals and families living with and overcoming the challenges of NF. If you’d like your story to be featured please email ggleeson@ctf.org with an article of approximately 500 words, and your picture (or your family’s picture). If you like this story please share it with your friends and family via email, Facebook, Twitter etc. Together we can do wonderful things to promote NF awareness and research, thank you for your commitment to the cause.
Hello everybody! My name is Mariana and just like you NF is part of my life. Everything started when my first child was diagnosed with NF1 almost 7 years ago. When Alex was just a couple of weeks old, we noticed the café-au-lait spots and the pediatrician sent us directly to the geneticist. The diagnosis was obvious for the doctor. He mentioned to us this unknown word: ‘neurofibromatosis’.
We didn’t know what to say, think or ask. Suddenly, our life became a rollercoaster and the journey of constant check-ups for eyes, ears and MRIs started. I was looking for information every single day trying to learn about the disorder and trying to find families that were dealing with the same conditions that we were back then. I needed to understand and share what I was feeling but I also needed for someone to share with me how it was to live with NF.
It took me almost 6 years to make a connection that has changed the way I feel and the way I see this disorder. It was last year when I attended the NF Forum [learn more] that I made contact with people just like me, families with sons or daughters who have NF, teenagers living with NF and adults sharing how it is to live with NF. I also learned about all the research that is being done to find a cure for NF, how the clinical trials are planned and executed, all about the different doctors that work around the country, dermatologists, plastic surgeons, neurologists, etc.
It was great to feel that we are not alone. There are many NF clinics around the country that work very hard for us. There are a lot of people that are part of fundraising for research even though in many cases NF is not part of their life directly.
The most amazing part of being in the NF Forum last year was all the wonderful people that I met. People that now are part of my life and that even if we are in the opposite side of the country, there is a special connection. These relations are for me the NF family that I looked for 6 years. I saw the children that have NF playing together. I met adults with NF that shared their experiences and how they live with NF. It just completely changed the way I felt about this disorder.
When I left Atlanta a year ago to attend the NF Forum, I was very scared. I did not know what to expect. I did not know how it was going to affect me. I can tell you now, that since I left Vegas last year, I feel empowered. I understand so much more how it is to live with NF. I feel more confident that we are making the right decisions to support our son. I am happy to have the friends that I met last year during the NF Forum. It does not matter that we do not see each other because we live far away, what matters is that we have established a connection. This strong link that makes us NF warriors fighting to find a cure.
