We’re excited to announce the winner of the 2017 NF Awareness Month “Where in the World do you End NF?” photo contest!
We were so moved to see all the different places you raise awareness for NF – across the ocean, across state lines, high up in the mountains and down the block from your home. Together, we will continue working to bring knowledge of neurofibromatosis to the forefront, so that more people know what it is.
Scroll down for the winning submission. Visit our Flickr album to scroll through all of the entries. And remember, you can always share your photos with us by using the tag #EndNF!
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Averhy was diagnosed with NF1 when she was only a few months old. She has never let any of it hold her back; the words I can’t do not seem to be in her vocabulary.
In October 2015, we noticed that her scoliosis was rapidly progressing. Her doctor advised us that surgery was no longer an option, but now a necessity. He explained that because of the NF, her scoliosis was “the worst kind of scoliosis a person can have.” It was dystrophic, meaning her spine was not just curving, it was corkscrewing. Averhy was afraid, but she straightened herself up as best she could and said “OK, let’s do it.” She was 9 years old at the time. In May 2016 Averhy had two surgeries with one week separating them. The first was a spinal release and they took a piece of her rib to use in the next surgery. The following week they went back in and fused her back from the base of her neck to the bottom of her rib cage using that rib bone. Never a complaint from Averhy. Four days later, I held her hand as she slid out of that hospital bed and was on her way home. This photo was taken last July on the beach in Port Monmouth, New Jersey, mere weeks after leaving the hospital. She promised everyone that she would roar louder than a lion…. and she did! Today Averhy is a happy, healthy little girl; she does not let NF weigh her down. She has just recently been medically cleared and is hoping to join a soccer team and turn in her clarinet for a set of drum sticks. She is looking forward to taking a summer drama class and spending time at air trampoline. Averhy stands straight and tall with a huge smile on her face every day. I know that NF will never be finished with her. We both know her journey is long with many twists and turns, there will be good times and bad times ahead, but I rest my head every night knowing she will face every battle head on and with a smile. |
