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Articles

Living with NF

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

 

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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.

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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

 

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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

NF Hero Luke Gavorcik

Luke Gavorcik Featured NF Hero"Our four-year-old son, Luke, was diagnosed with NF1 six months ago after an MRI showed he had an optic nerve glioma (a tumor on his optic nerve).

"Besides the tumor, he suffers from low muscle tone which impacts his gross and fine motor skills and he has several café au lait spots on his back.

"Luke is receiving chemotherapy on a weekly basis to try to shrink or stop the growth of the tumor on his optic nerve. Although he has suffered some side effects from the chemo, he is doing remarkably well.

"Luke receives occupational therapy (OT) and physical therapy (PT) to help correct his low muscle tone, as well as speech therapy.

"Despite all this, Luke is a very active boy who loves to play outside and could swing at the playground for hours. He is also an animal lover and spends a lot of time playing with our dog, Penny.

"We pray that someday there will be a cure for NF. Until then, we are keeping a positive attitude and looking forward to what the future holds for Luke, our hero!"

 Chris and Anne Gavorcik – Luke's Parents

Help Luke Fight NF

NF Champion Allison Page

Allison Page Featured NF Champion"My name is Allison, I am 24 years old and, and I live in Birmingham, Alabama.

"My journey with neurofibromatosis has not always been easy, but I made it through the tough times. I had a large tumor that was causing me significant pain removed in 2004, but the doctor could not get all of it out. However, I am a very resilient person and I know that God is going to make a way for me.

"People tell me all the time that they can't believe how strong I am. I just choose to focus on the positive. Yes, I am still in pain and there is still some tumor inside of me, but if it weren't for the surgery in 2004, I wouldn't be able to walk today.

"I am grateful to my friends and family for helping me through the difficult times, thankful to all those that raise money for neurofibromatosis research, and inspired by everyone else with NF who fights this disorder with me."

Allison Page

 

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Contact Us

Children's Tumor Foundation
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New York, NY 10005-3904

Phone: 212-344-6633

info@ctf.org