Hi, my name is Isabelle and I am 10 yrs old. I was born with Neurofibromatosis type 1. This disease causes tumors to grow on nerve endings. I was born with plexiform tumors on the brain, face, and neck. I also had severe glaucoma in my right eye which caused me to be blind in that eye. I am deaf in my right ear as well. I go to The Children’s Hospital of Philadelphia where I have the best doctors. When I was 18 months old, they removed my right eye and did some other surgeries to help my sleep apnea and to monitor my tumor growth every 3 to 4 months with very long MRI’s. I don’t think I can remember a time when I didn’t talk to God. I guess I’m pretty lucky to have such a perfect Father especially since my dad isn’t really around because he has a drug addiction. He is usually in jail or not in the best shape to be able to see me and my twin brother, Jaiden. Jaiden also has NF1. We pray for him everyday to get better and for him to follow Jesus. It’s so sad.
I think maybe I’ll be a youth pastor when I grow up. I go to public school and I talk to my friends about Jesus and some of them don’t believe and it gets me upset because I want them all to go to Heaven. But my mom says that if I plant the seed, God will make it grow. Sometimes it is hard being different and sometimes I get upset because I wish I knew God’s Plan for my life. My mom says, one day it will all make sense and I will know, but until then I’m playing violin everyday! Last year, Mark Hall told me at a Casting Crowns concert, that God shows us things a little at a time and we should always keep our hands open so we don’t miss anything, and that makes me feel better. I just finished a year of chemo and at first it was shrinking my tumor, but my last MRI showed that my tumor has started to grow again. I was not able to continue that particular trial chemo because I didn’t meet the criteria, but my awesome doctor is starting me on a new chemo treatment this summer. I don’t worry because I know that God is large and in charge! He already know the plans he has for me even when I don’t. So, I guess there will be surprises around every corner. I would like to tell everyone that no matter how terrible things may seem to be, look for the good things, the awesome things, the things that are from God, and know, “He’s got this.”
