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Stories of NF: Marisa M.

By January 10, 2017February 28th, 2024NF1, Story of NF

“I was diagnosed with NF when I was a child. When I was kid, I had some trouble paying attention due to a mild form of dyslexia.  From kindergarten all the way through college I would get extra time on tests, I was never medicated. My mother and my teachers, always understood me, and I always did my best.

“As of right now it’s pretty difficult since I have some tumors growing on part of the nerve in my neck area on the right side. At the moment I can no longer grasp, write, or pick up anything with my right hand. I’m also in pain 24/7. Some nights the pain is so severe that I get no sleep. I’m learning to do things with my left hand.

“On October 28, 2013, I had a 3 lbs. 2 oz. tumor removed from my right shoulder area. I was a patient at New York Presbyterian, and was there for about a week. While I was there I had a book, and every person that visited me, had to sign the book and say what made them happy, and what inspires them. I am very fortunate enough to have been raised by an incredible mother, and to have such amazing friends and family in my life.

“When I was discharged I went to physical and occupational therapy for a few months. I was feeling fine and I was able to type, write and continue my work as a photographer, and even one of my favorite hobbies, cooking, with my right hand. Part of my tumor had some cancer signs on it so I had to get a pet scan. Luckily nothing else had spread and I was OK. Fast forward to the year 2015 I started feeling weak and numbness in my right shoulder and hand. I went for countless scans and recently a PET scan. It turns out that there are some new tumors forming in my nerve root area on the right. At the moment, I have no mobility or movement in my right hand so I am learning to use my left hand.

On top of feeling pain, numbness, weakness, and the lack of mobility in my right hand, my mother, who was my best friend and who raised me as a single parent, suddenly passed away last year from melanoma. Dr. Yohay knew her, and knew how tight our relationship was. She was only in her 60s, a ray of light to hundreds of people around the world. People often ask me, ‘How do you do it?’ I express, ‘I was raised by the most incredible mother in the entire world who showed me what strength is, and to never give up.’ Yes there are days I cry with the lack of mobility and the pain in my right arm and yes, I also cry without my mom being here. But, like Dory says, I just have to keep swimming.”



Cooking and working out
Kale, pasta, sushi, and Mexican.
I just want to make people happy, and I want people to realize that life is such a gift, we must always love fully, and we must never give up on ourselves, or our dreams.

Guatemala, July 2016, volunteering to take photos of children in an afterschool program

Marisa with her mom on her birthday