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Living with NF

Our NF Heroes - Archive GENESIS

CourtneyWilloughby Champion2Genesis Reyes Hero 3

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 "NF Heroes."

CTF is also fortunate to have many "NF Champions," contributors that go beyond the norm to help fight NF, regardless of their connection to neurofibromatosis.

Please click below 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 Ella Kest

Ella Kest"My daughter, Ella, is definitely the hero of our family and we are extremely proud of her. Ella was diagnosed with NF at 16 months old. One day, she was playing outside like any other toddler and her tibia fractured. After we looked at the initial x-rays, we knew this wasn't a normal fracture and the term neurofibromatosis was quickly introduced to our vocabulary.

"We researched the best physician and our search took us all over the Midwest - Paducah, KY (where we lived at the time), Nashville, TN, Memphis, TN, Chicago, IL, and finally Cincinnati, OH. Ella had to endure being in a leg cast for seven months and became a master at walking and running in it. She had her first surgery just two weeks before her second birthday. They had to break her fibula, insert a rod, and take a bone graft from her ileac crest which resulted in a five hour operation. During her recovery, she had to be in a full body cast from her chest to her ankles which meant she had to remain lying down for three months. We are talking about a two year old!!! It was extremely difficult and uncomfortable. She had night terrors, muscle spasms, and a lot of pain but she fought through it and even learned to do the army crawl to get from one room to the next.

"She underwent her second surgery at age four due to growth. Once again, she was back in a leg cast but this time she was able to use a wheel chair. She has been in a leg brace ever since her first surgery and she has defied all odds. Nothing seems to slow her down or hold her back. She is determined to be active and engage in life. She has been in dance, gymnastics, swimming, karate, piano, and Girl Scouts.

Ella Kest "We are meeting with her orthopedic doctor on Wednesday to schedule her next operation which might entail surgery on both legs. The psuedoarthrosis in her right leg has led to leg length discrepancy.

"Ella also has an optic glioma on her right optic nerve at the chiasm which is being monitored with MRIs.

"Ella is an amazing student. She has to put in more effort than the average student but with the help of her tutor and her determination she has had excellent results in school. We recently relocated from Kentucky to St. Louis, MO where she is a second grader at Meramec Elementary School. It's difficult for any child to relocate and make new friends but especially for a child with NF and a physical disability. Ella holds her head high and has a certain confidence about her. She is compassionate and sensitive and wise beyond her years. Ella is amazing!!!"


-- Emily Kest, Ella's mother

 

 Ella Button

Our NF Heroes ( Genesis + Kelly)

KellyDeHart Champion3Genesis Reyes Hero 3

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 "NF Heroes."

CTF is also fortunate to have many "NF Champions," contributors that go beyond the norm to help fight NF, regardless of their connection to neurofibromatosis.

Please click below 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 Courtney Willoughby

Courtney Willoughby NF Is 2

 
 
CourtneyWilloughby 281w

"My name is Courtney, I am 20 years old, I live in Canada, and I was diagnosed with NF when I was three."

"I lived a pretty normal life as a kid and never really had issues until a plexiform tumor was discovered in my back and removed when I was 13. My pediatrician then sent me for an MRI of my brain, just as a baseline for future reference since I had never had an MRI before. A few weeks later I was diagnosed with an inoperable brain tumor; I was absolutely terrified. I thought that I had cancer and that I was surely going to die. Lucky for me however, my tumor has not grown since it was discovered almost seven years ago. Remarkably, it has actually shrunk!"

"I have also been diagnosed with scoliosis, a rare hormonal condition called hypopituitarism, growth hormone deficiency, chronic daily headaches, over active bladder, polycystic ovarian syndrome, and an abnormal development of my ribs. I also have multiple tumors throughout my body."

"I had a really hard time coping with NF when I was a teenager; I thought that people would think I was weird or gross if they knew about my medical condition. So I kept it hidden. That, however, sent me down a dark road of depression and anorexia. It was horrible. But everything changed when I was 17 and had the opportunity to meet Reggie Bibbs, the NF advocate and founder of the Just Ask! Foundation. He absolutely changed and saved my life. He is my role model, and I am so thankful that I met him when I did."

"In order to raise NF awareness, I organized a large fundraiser in 2011 and donated the proceeds to the Friedman Lab in British Columbia. Initially my goal was to raise $2,000, and I was absolutely shocked and amazed when my total reached nearly $20,000! People’s kindness and generosity made me feel like I was truly accepted and respected. Looking back, I don’t know why I was ever afraid."

"Currently I am in my third year of nursing school. I hope one day to be a pediatric surgical nurse, and give back to my community."

by Courtney Willoughby 

Our NF Heroes (Genesis Reyes) (3)

NFChampion-NFolkGenesis Reyes Hero 3

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 "NF Heroes."

CTF is also fortunate to have many "NF Champions," contributors that go beyond the norm to help fight NF, regardless of their connection to neurofibromatosis.

Please click below 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 Kelly DeHart

NF Champion Kelly DeHart

KellyDeHartNFChampion 300w"I've been battling NF2 since I was little. I started losing my hearing around age 19 and was completely deaf by 21 years old, at which point I also lost facial function on the left side."

"During the summer of 2013, I made plans to work at a camp and to graduate college. However, I began feeling very ill and my doctor diagnosed me with hydrocephalus caused by an acoustic neuroma pressing on my brain stem. I had to undergo urgent surgery, had to miss my graduation ceremony, and had to decline the camp position for the summer. My life as I knew it had come to a screeching halt."

"This surgery was one of the most serious of my life, and I've had many. My entire right side weakened and I lost the ability to speak, write, hear, and eat. I had to have a feeding tube inserted, and had extensive physical therapy. My doctors said it would take at least a year for me to fully recover. Boy did I prove them wrong! See, NF might try to stop me, but I'll never let it. A disability will never define me. I believe how we overcome challenges is what defines us."

"Shortly after my operation, while still in the hospital, I graduated. I also reapplied to work at the camp, for their summer 2014 session. At only five months post-surgery, I took a two-week road trip across the United States with my best friend, and seven months after my operation, I traveled to Costa Rica."

"I admit my life isn't the easiest, but it's so worth it."

by Kelly DeHart  

Help Kelly DeHart Fight NF

 

Contact Us

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

Phone: 212-344-6633

info@ctf.org