Hi !
I am Constance, I am 15yo, I am French but I live in San Diego, California and I will be a Sophomore in september! That is at the same time exciting and a little bit scary for me.
I am born with a spontaneous genetic mutation in the NF1 gene. I was officially diagnosed when I was 18 months old, but doctors suspected I had NF1 from the beginning, since I had many café au lait spots, both large and small.
Ever since I was a little girl, I have always been curious, energetic, funny, and very outgoing.
On November 25th 2015, because my vision decreased, I had my first brain and orbit MRI and we discovered a large optic glioma all the way around my optic nerve and chiasma. I did not realize what happened on that day even if I saw the MRI images, since I was only five, too young to understand what was going on.
My vision eventually stabilized at that time, but I finally had to start my first chemo in November 2019 when it decreased again, it was about 1 year after I moved from France to the US.
It was scary but the oncology team was great and even if I had some chemo on Christmas and New Years eve, I used to be always smiling, singing and helping the other kids in treatment. I even made hundreds of bracelets to give to the kids and nurses! I was brave enough, not to cry or scream during the pokes, because I didn't want the others to feel bad for me or to scare the other kids.
When Covid happened, everyone was in lockdown, but I still had to go have my infusion weekly, it was weird to be almost the only car on the road.
Since then, I had 3 different chemo by infusion, and 1 oral one, (it was the hardest one, and I lost a bunch of my hair just before I started 8th grade), I also had several surgeries this year and had to stay in a wheelchair for a while due to a treatment-caused injury. I am currently on my 4th chemo to keep my vision as stable as possible.
As soon as I was able to walk again, I started my white cane training. As I am legally blind and visual impaired due to the optic glioma, my goal is to apply for a guide dog during my senior year to be able to be more independent during my college years.
I am so happy to participate to SketchNF as I love art. I draw a lot, and it is one of my favorite activities.
I hope I will send some happy vibes with my drawings because I try to stay positive even through the toughest times, and it's even better if I can make people around me smiling and feel good!
Thank you for reading,
Constance