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Hi, my name is River. I'm 8 months old and I live in Las Vegas, NV. I love playing with my brother, smiling and food. I have a rare genetic disorder called NF1. It affects everyone differently. There is no cure for NF1. It causes tumors to grow on nerves throughout the body, may lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain and cancer.
At two weeks old, I was diagnosed with glaucoma and had surgery to save my vision. I was also diagnosed with torticollis and Erb's Palsy in both arms. I've been working very hard in physical therapy for the past 7 months and now have full movement in my neck, arms and hands and hope to graduate soon out of PT.
On Feb 8, 2021, I had my first MRI and it was confirmed I have plexiform brain tumor behind my right eye and and its entering my sinus cavity.
In March, we got the call that Stanford's Children's Hospital would take my case and we flew out to meet the team. In April, we were told my tumor is inoperable as I'm at risk of losing my ability to move my face, see, chew, swallow and speak if removed.
My tumor is growing and is causing changes in my eye and face. If untreated it will disfigure my face and I will lose my vision and movement in my face. My only other option is to start chemotherapy. I will be the youngest patient on MEK Inhibitors for NF1 in the US. We are thankful they were FDA approved in April 2020 so I can have treatment.
These past 8 months have been very difficult for me and my family. My mom and dad both work very hard and are doing their best to support and care for me. I am set to start chemo in June. I will be in treatment for 28 months. We will be traveling back to Stanford every month so they can check my blood, do an MRI, retina eye scan, meet with a cardiologist, Echo and EKG.
My parents love me so much and are doing everything they can for me. Since there are no local specialists I am going to need lots of visits to my specialists in Palo Alto, California. This means a lot of flights back and forth, car rentals and hotel stays. Please help me and my family, if you can, so I can help fight this genetic disorder!
I was born a fighter!
At two weeks old, I was diagnosed with glaucoma and had surgery to save my vision. I was also diagnosed with torticollis and Erb's Palsy in both arms. I've been working very hard in physical therapy for the past 7 months and now have full movement in my neck, arms and hands and hope to graduate soon out of PT.
On Feb 8, 2021, I had my first MRI and it was confirmed I have plexiform brain tumor behind my right eye and and its entering my sinus cavity.
In March, we got the call that Stanford's Children's Hospital would take my case and we flew out to meet the team. In April, we were told my tumor is inoperable as I'm at risk of losing my ability to move my face, see, chew, swallow and speak if removed.
My tumor is growing and is causing changes in my eye and face. If untreated it will disfigure my face and I will lose my vision and movement in my face. My only other option is to start chemotherapy. I will be the youngest patient on MEK Inhibitors for NF1 in the US. We are thankful they were FDA approved in April 2020 so I can have treatment.
These past 8 months have been very difficult for me and my family. My mom and dad both work very hard and are doing their best to support and care for me. I am set to start chemo in June. I will be in treatment for 28 months. We will be traveling back to Stanford every month so they can check my blood, do an MRI, retina eye scan, meet with a cardiologist, Echo and EKG.
My parents love me so much and are doing everything they can for me. Since there are no local specialists I am going to need lots of visits to my specialists in Palo Alto, California. This means a lot of flights back and forth, car rentals and hotel stays. Please help me and my family, if you can, so I can help fight this genetic disorder!
I was born a fighter!