• ProgramsList-R4R ProgramsList-NFE ProgramsList-NFW ProgramsList-CUR
  •  NF Camp                  confLogo                 forumLogo

Articles

Living with NF

NF Champion Railyn Norton

RailynNortonFeaturedNFChampionPhoto"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!"

Railyn Norton
Bay Minette, Alabama

 

Railyn Button

NF Hero Callum Milligan

Callum Milligan"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

 

Callum Button

NF Hero Callie Coulombe

Callie Coulombe Featured NF Hero 350w"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

 

Callie Button

Our NF Heroes Luke & Allison (10)

NF-Champion-Allison PageNF-Hero-Luke-Gavorcik

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.

nominate-button2
To nominate your NF Hero or Champion, please send a brief story along with a picture (1mb or smaller) to Mary Vetting at mvetting@ctf.org

NF Champion Tami Harbour

Tami and Teri Harbour"My twin sister, Tami, is one of the most beautiful people I know. She is loving, caring, kind, funny, fun, generous, and very sensitive. When people stare at her, avoid her, or are afraid to touch her, she is deeply hurt. The quote, 'Don’t judge a book by its cover' is perfect for her.

"Tami was born with neurofibromatosis and as she got older, it got worse. She had surgery on Aug. 4, 2014 on a particularly large tumor in her lower back that had been causing debilitating pain down her right leg for about five years. The tumor was the size of one-and-a-half golf balls.

"Up until the end of 2012, she worked for fifteen and a half years as a housekeeper at a nursing home. The residents loved her because she was one of the few employees that took the time to look them in the eye, talk to them, laugh with them, and get to know them. She truly cared about these people.

"Tami sees the world through pure and innocent eyes. Despite everything she's been through, she manages to stay positive and continues to give her beautiful love and soul to those around her. She wouldn’t treat anyone poorly because of the way they look. If you come across Tami or someone like her, please take the time to 'look beneath the cover of the book' and find the beauty written on the pages."

Teri Harbour, Tami's twin sister

 

Tami Button

Our NF Heroes (Matthew + Lewis) (9)

Lewis-Edmundson NF Hero Matthew Trujillo

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.

nominate-button2
To nominate your NF Hero or Champion, please send a brief story along with a picture (1mb or smaller) to Mary Vetting at mvetting@ctf.org

Contact Us

Children's Tumor Foundation
120 Wall Street, 16th Floor
New York, NY 10005-3904

Phone: 212-344-6633

info@ctf.org