Neurofibromatosis Type 2
the hope for a cure...
That's me and my oldest girl. Her name is Laurel. She loves softball, drawing, minecraft, time with friends, and she's learning to play the flute.
She also has NF2.
In August 2017, my daughter, now 10, was diagnosed with Neurofibromatosis Type 2. This genetic disease affects about 1 in every 30,000 - 40,000 people, so that's pretty rare. Like me, you've probably never heard of it. After some quick education and countless hours of online searching, facebook group discussions, and doctors visits, we know quite a bit more and the conclusion is...there's no cure right now and we need your help.
I pretty much spent the first week after her diagnosis crying and searching for answers. You see, this mutation, which can happen spontaneously at conception, causes her nervous system to create tumors. A protein that blocks cell overproduction in her 22nd chromosome mutated and now cells can grow unchecked. She has two small tumors called vestibular schwannomas on her hear nerves, and a larger tumor at the top of her spine. Every case is different as there's some 400 mutations that can occur in this chromosome. But there's the potential for hearing loss, facial paralysis, challenges with sight and movement, etc.
Right now she is ok. However, this is something she will come to battle her entire life. To help monitor tumor size and save her abilities, surgery will be her main treatment when the masses are sizable and her body will continue to produce tumors, so she will go in for MRI scans every 6 months.
We are fortunate to have excellent health insurance and will be under maintenance care through Children's Hospital of Los Angeles. While we wait and hope for more advancements, we are encouraging awareness and donations to the Children's Tumor Foundation. A portion of my calligraphy & illustration income will be going directly to their research. If you feel so inclined, we would love your donation and support as well.