Melody Leibow, Co-Founder

August 8, 2018, 2:57 PM - I don't normally post anything long and emotional, especially when it comes to MRI's, doctors, and all that comes along with dealing with NF. But today I feel overwhelmed and need to let go. Sorry for the length.

Emma has had so many MRI's that now we have lost count, we think this is number 15. We always try and make it fun, and for her sake, make it seem like no big deal. The truth is, it is a big deal. This isn't something that we want her to experience and yet it almost seems normal to her. We hold it together until she goes into the loud, cold room. It isn't until the door closes and I have to leave my little girl with a team of people I don't know but have to trust, when I finally break down with a range of emotions that I can't control.

Going through this, more important, watching her have to go through this, makes me feel angry, scared, worried, grateful, and hopeful all at the same time. Angry that she has to be put through so much and endure all that comes with having NF. Angry that she has NF!!! Scared because with every MRI you are either monitoring an already existing brain tumor and hoping that it hasn't grown since the last MRI or worried that there will be a new tumor to monitor. It's the constant fear of the unknown. Grateful that we have such an amazing team of doctors and that the staff at CHLA is incredible at what they do. Grateful to have so much support from our friends and family. (the little texts throughout the day make a huge difference). Hopeful that someday they will figure out how to treat or even better cure NF. Hopeful that as she grows her struggles with this disorder won't get too bad. Just......Hopeful.

I have been talking about my emotions but really it doesn't matter as much has how she feels. It's not about me. When I ask her if she is ok, she always answers yes, she never complains, and she just does what she needs to do. She is a total badass!!! She shows us everyday what it means to be brave. I know there are times she is nervous but she usually takes a deep breath and smiles. That's what we have to do, take a deep breath and have faith that everything will be ok.

Keep being hopeful, keep praying, and keep talking about NF.

Emma, The Inspiration

I want everyone out here in this world with NF to not let it block your dreams and overcome the fears of NF.