We’re excited to announce the winner of the 2018 NF Awareness Month I Know a Fighter photo contest!
We were so moved to see so many NF Heroes showcase their fighting spirit. “I Know a Fighter” gives voice to those living with neurofibromatosis and is a reflection of the bravery that NF patients exhibit in their daily lives.
Scroll down for the winning photo and honorable mentions. Visit our Flickr album to scroll through all of the entries. And remember, you can always share your photos with us by using the hashtag #EndNF!
(The description below each photo was submitted with the entry.)
WINNER:
My fighters are 7 and 9 years old. The elder, Timmothy, has not experienced many effects of NF and only has nominal outward appearances in the form of spots and a small cyst. The younger, Clayton, has a plexiform neurofibroma along the CN7 nerve sheath. Their father also has NF.
Both boys are your typical energetic, fun-loving boys. They delight in getting on each other’s nerves and pestering their sisters. Both are incredibly smart and currently score near the very highest of their classes in all of their testing.
The pictures were taken at our local park. They are partially dressed in their Karate giis, a sport they both recently started in January.
-Submitted by Latasha Binford, Timmothy and Clayton’s mom
Honorable Mentions:
(in no particular order)
Grady, who has NF1, just turned five. This photo was taken on May 17, 2018, World NF Awareness Day!
-Submitted by Stephanie Dawkins, Grady’s mom
Ranger was diagnosed with NF at the age of 7, just eight months ago after genetic testing. He is pictured here at a park in Denton, TX with his emotional support dog named Ellie.
-Submitted by Dr. Linda Robinson, Ranger’s mom
Brooke is 5 years old and we’ve known about her condition for a little over a year now. Even though she has to get MRIs every 3 months and she sees many doctors she still smiles everyday all day. She never lets the pain stop her. She is truly an NF Hero!!
-Submitted by Laurelle Johnson, Brooke’s mom
This is Frankie. This photo was taken two years after he started taking the MEK inhibitor Selumatimib. His tumors are down 31%! Before beginning the treatment, he was not able to turn his head very far and couldn’t put his chin down at all. He rarely smiled. Two years later, he smiles all the time, and is a happy little 8 year old. Frankie is why we fight.
-Submitted by Jane Fergus, Frankie’s mom
This is a photo taken on the afternoon of May 5, 2018 at the W Hotel in Atlanta, GA. Founder and inspiration of CureNFwithJack was preparing for his speech that evening to the Volunteer Forum. Jack is seen here getting dressed, impeccably, in his suit and tie as he prepares to announce to the CTF community that he is donating $150,000 toward research. What the unsuspecting audience does not know is that he is adding an additional $40,000 to that total in celebration of the 40th anniversary of CTF. Despite his challenges associated with NF, Jack eloquently and flawlessly delivered his message that evening and brought down the house.
-Submitted by Jake Burke, Jack’s dad
Lindsey is 23 years old and has NF1 and congenital pseudarthrosis of the tibia (CPT), a rare pathology usually associated with NF1. Lindsey wears a leg brace 24/7 and has never walked without one. She has had around 20 operations mostly for her leg, but a handful for NF as well. #BornAFighter
-Self-submitted
Crew is our NF Fighter! He is 3.5 years old and was diagnosed with NF1 at 13 months old. He has had so many struggles, but despite these hurdles our “Crew Man” is all smiles! He is silly, energetic, very loving, strong-willed and so smart! When we go to his doctor appointments or MRIs every 3 months he tells the doctor and nurses what steps are next. He has a difficult road ahead but I am proud to say he is our NF Hero!
-Submitted by Hilary Berens, Crew’s mom
This photo was taken the day of our NF Walk in Richmond, VA!
– Submitted by Rebecca Brooks
This is Ashok Shrestha, who has NF1 and flew from Nepal to the United States on a medical visa to undergo life-altering surgery. We invited him to Omaha a few times and we were able, with the help of social media and everyone’s generosity, to fundraise over $50,000 for the first of his facial tumor surgeries. I brought him to Creighton University where he met all of the people on campus that helped make his surgery possible. In this picture, I am chatting with him in the garden. He is happy because I told him that I am going to repaint his portrait after the 1st surgery and the painting will be him taking photos.
– Submitted by Rachel Mindrup (on the right), ‘Many Faces of NF’ portrait painter
This is Niles who has NF1 and Epilepsy. He is fierce, strong and the comedian of the family. He always knows how to put a smile on your face. He definitely is a fighter and keeps on going.
-Submitted by Nicole Blevins, Niles’ mom
This is my NF Fighter, Ben, taken at September’s Chicagoland NF Walk. Ben loves having everyone come together to be part of “his” day. This past year The Mighty Meeks were 50 members strong!
Ben was officially diagnosed with NF1 at age 3 after first being identified with signs of NF at six months of age. He is now 9 years old. Ben is a very social boy who hates missing out on school for doctor’s appointments but doesn’t miss out on playing hard at recess, being a red belt in tae kwon do, being in baseball, playing piano and spending time with friends and family. He is a fighter who won’t give up his drive to “keep up.” Through it all, Ben is a sweet and funny boy with an infectious laugh that reminds us what’s important!
-Submitted by Kristin Meek, Ben’s mom
Hi my name is Hunter, I am 3 years old. At 10 months I was diagnosed with NF1 Micro deletion syndrome. I have had some struggles with my everyday life such as developmental delays, speech and language delays, and issues with my stomach and eyes. I am going on my 6th sedation in my short 3 years. I love playing outside, Mickey, and my big brother!
-Submitted by Tasha McPherson, Hunter’s mom
Evan is the youngest of 5 siblings, but he’s anything but a baby. He’s a brilliant 9 year old boy who has a maturity about him that can be seen from afar. Evan was diagnosed with NF1 at a mere 8 months.
Over the years, he has dealt with a host of NF complications, such as tumors, seizures, endocrine failure and more. He has been in a 9 month fight for life since August 2017. He had surgery to repair a severe pectus excavatum. Because his body is so frail, he’s had a very hard time recovering. After months of tests, we recently learned that his adrenal glands were failing, as a result of pituitary dysfunction. We assume it’s due to a previously reported hypothalamic/pituitary glioma. He will scan soon to make a plan.
Somehow, the worsening of his physical situation hasn’t negatively impacted Evan’s spirit. On the contrary, we see him becoming more aware. His love and time shared is more purposeful and with distinct intention. His desires have grown. His faith is definitely deeper seated. I have to assume that without NF, Evan would still be one amazing child but I also know that the qualities he possess came from his life experiences. Obstacles aren’t always our enemies.
This photo was taken at home on May 8 of this year. Evan and his dog Charles are inseparable. Evan adores him. The feelings are mutual, I’m certain. He relies on Charles when he’s sick. Charles comforts him and brings a calm to Evan that’s unexplainable.
-Submitted by Krystena Richards, Evan’s mom
