Living with NF
The Children's Tumor Foundation is inspired and encouraged by those that face neurofibromatosis with resilience, fortitude, and bravery every day. In honor of their strength and courage, the Foundation refers to people who live with this disorder as either "NF Heroes" or "NF Champions."
Please click on the photos to read their stories and view their profiles.
To nominate your NF Hero or Champion, please send a brief story along with a picture (1mb or smaller) to Mary Vetting at firstname.lastname@example.org
"I met my wife, Meg, in college at Mississippi State University in the fall of 2000. We hit it off and I knew she was the girl for me. We graduated in 2002, I went to work while she pursued a graduate degree, and we were engaged later that year. Everything was going great!
"Then, in late 2003, she was diagnosed with NF2 and bilateral acoustic neuromas. She had a craniotomy a month later for the right tumor which caused facial paralysis and deafness in one ear. A year later, she had stereotactic radiation on the left side tumor.
"Meg taught school for three years. Then, in 2007, she decided to study physical therapy. In 2010, Meg graduated from PT school and gave us the most wonderful gift in the world, our son Will.
"Meg is the Director of both the Physical Therapist Assistant Program and the Physical Rehabilitation Program at our local hospital, as well as an awesome mom to our son and an incredible wife.
"She is hands down my hero. She battles the biyearly MRIs, doctor appointments, needles, deafness, headaches, and balance problems with aplomb. Regardless of her difficulties in association with NF, she always finds time to be a parent, a therapist to others, and a loving wife.
"What a strong woman I married! I'm glad I have a hero on my side!"
-- Jason King, Meg's husband
"Braxton is two years old and was born with NF1. I also have NF as does my mother, grandmother, and one of my brothers. Neurofibromatosis causes Braxton to have seizures and social anxiety, but otherwise he's an active, smart, happy, little boy.
"Braxton enjoys playing with his Thomas the Train toys and going to his grandmother's house, and his favorite colors are red and orange.
"We battle NF as a family and join the Children's Tumor Foundation, and all those who have neurofibromatosis, in looking forward to the day when this disorder no longer exists."
-- Desiree Tull, Braxton's mother
"When I was four, my right eye started sticking out and I lost some vision in it. My parents took me to an eye doctor who thought nothing of it and put glasses on me. My vision worsened so we visited my pediatrician who told us that he saw something blocking my vision.
"The next few weeks were a blur of doctor appointments and tests. A biopsy was taken of the mass that my pediatrician saw, and we were told that I had a tumor behind my right eye. It eventually caused me to lose sight completely on the right side, and a couple of years later they removed my eye.
"I've had 25 surgeries since age four. I have also had tomo therapy and cyber knife radiation. In 2008, I was diagnosed with NF2 and traveled to Memphis, TN to have a tumor removed from my spinal cord. After returning home from that surgery, I went backwards instead of forwards in healing; I wasn't able to walk or use my hands much. I went to Birmingham, AL for a month of rehabilitation, followed by continued therapy in Fairhope, AL.
"For a year I was in a wheelchair. But on Christmas Eve I got up to get a candy cane off of our tree and have been walking ever since!
"I graduated high school and am now in college pursuing a degree in nursing. I'm deaf and blind in my right eye, but my faith stands strong!"
Bay Minette, Alabama
"My NF Hero is my grandson Callum Milligan who is seven years old and lives in Burnie, Tasmania, Australia. Callum was born in England in December 2007 to his English father, Mark, and Australian mother, Louise (my daughter). The family returned to Australia when Callum was eight months old and a brother, Lucas, joined the family shortly thereafter.
"Callum had multiple café au lait spots and was officially diagnosed with NF when he was four. He has had numerous visits to various hospitals for procedures such as the removal of a large plexiform tumor from the side of his chest. Callum has several other tumors in various parts of his body, suffers from vision problems, and has global delayed development.
"Despite all of these issues Callum is a beautiful little boy, always smiling and happy, and never complains about his many doctor appointments. He loves computer games, sports, and, particularly, his brother and cousins who are his best friends."
Bryan Ward, Callum's grandfather
"My NF Hero is my three-year-old daughter Callie. At her nine month checkup, Callie's doctor noticed her 'brown spots.' Thankfully her doctor was aware of NF and we were referred to a neurologist. Based on the café au lait spots and the family history of NF, it was confirmed that Callie had NF1 in 2012.
"I had NO idea what this would mean for our family. After a precautionary MRI when Callie was one and a half years old, we found out that she has an optic glioma. This tumor is watched very closely at doctor appointments every three months. At two and a half years old, I noticed Callie's eye was bulging a bit. She had another MRI and we found out the tumor had grown. We were going to start chemotherapy but have decided to continue to monitor her vision and the growth of the tumor for the time being. So far, her vision is stable and so is the tumor.
"We travel six hours every three months to Boston Children's Hospital for neurology and ophthalmology appointments. My daughter has had more doctor appointments in her three years of life than I have ever had, but she is such a trooper about it all. Callie has had five MRIs so far, and has been receiving early intervention services since the age of one for speech, occupational, and physical therapy.
"Looking at Callie, you'd never know she had so much going on in her life. She is an energetic toddler who loves Minnie Mouse and is very excited about starting school soon.
"I worry every day about what her future holds. I try my hardest to spread NF awareness and am still learning about neurofibromatosis; I will continue to learn as much as I can to help my daughter in any way possible.
"I’m grateful to the Children's Tumor Foundation for bringing NF families together so that we can learn and help each other, and celebrate our NF Heroes!"
Shannon Coulombe, Callie's mother