I am the oldest of 6 kids. I like being a part of a big family, because you always have someone to talk to or play with.
When I was baby, my mom and I played together everyday. We'd take walks and go to the park.
My brown spots were so light, that even doctors couldn't see them.
I grew and developed normally.
Neurofibromatosis was never brought up in me and we didn't think it ever would be.
I struggled a little bit in school and I was given an IEP to help me out....but things still didn't come very easily.
When I was 13 yrs old, I began having headaches....By this time, my mom had gotten diagnosed with NF and was getting all the kids checked out, to make sure we were okay.
My brown spots were more visible now and since my mom had NF, doctors said I had it too. It didn't bother me much...I was happy and healthy.
When I was 14 years old, the headaches and dizziness began to get worse. My doctors just told my mom that it was normal.
I ended up in surgery after many many ear infections and swollen tonsils. The drs took out my tonsils and put tubes in my ears.
The recovery from that was TERRIBLE!!!
The headaches were not going away, and I began to notice my hearing wasn't very good on my right side.
My mom kept telling the drs to get me an MRI....But they kept saying it wasn't necessary. My mom went through fighting with the insurance to get them to approve an MRI and was denied 2 times, then on the 3rd try, we got approved!
The results from my MRI shocked me. I was told that I had a tumor called an Acoustic Neuroma. The drs were interested in my case, because those kinds of tumors are more common with NF2 (a similar disorder)
After the MRI, I met with a Neurosurgeon who wanted to do surgery on me.
My mom researched the surgery on-line and a plan was put into place.
We moved to Denver over the summer and was able to get a 2nd opinion with the Children's Hospital out here.
These drs did not agree that surgery was the best thing...so I was told we needed to watch and wait.
I was told that we were to get an MRI every 6 months and watch the tumor for growth, because surgery would make me go deaf and possibly deform my face.
After my last scan....another tumor was found. This one is on a part of my brain that drs won't operate on. The scan also showed that my 1st tumor has changed and grown.
Sitting in the drs office and hearing that I needed Chemotherapy really scared me. But I knew it was the best thing.
Having Neurofibromatosis makes me special. This is what I focus on. I don't focus on the bad stuff....because there will always be bad stuff. God doesn't make mistakes...and while NF is scary and unpredictable, I just remember that it is up to me, how I chose to live my life.
I want to help others who are struggling. I want to let others know that being different can be a blessing. You just need to look at it, in a different way.