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Articles

Living with NF

Our NF Heroes and Lewis

Lewis-Edmundson NF-Hero-Logan-Monteith

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 Matthew Trujillo

Matthew Trujillo Featured NF Hero"My four-year-old son Matthew was diagnosed with neurofibromatosis type1 when he was six months old. He is the first in our family to have NF and he has been a real trooper as we learn what life is like with this disorder."

"Matthew is farsighted and has worn glasses since he was one year old. He does not have any lisch nodules in his eyes or neurofibromas, but he does have many café au lait marks on his body and some learning delays. He will be starting occupational therapy this year and has been in speech therapy for three years. He works very hard during his sessions to improve his language skills. Matthew also has laryngotracheobronchomalacia, which means that breath does not flow through his airway properly."

"None of this, however, has stopped Matthew from doing anything that he loves! He is a very active boy who loves to play baseball, watch the San Francisco Giants, and hang out with his big brother. He also has an awesome imagination and is a great helper around the house."

"We are very hopeful that one day there will be a cure for NF. Until then, we take each day with a breath of fresh air and are thankful to have this amazing little guy in our life. Matthew is a blessing and a hero."

Nicole Meyers, Matthew's mother

 

Matthew Button

Our NF Heroes Logan and Matt (8)

Matt Camacho NF ChampionNF-Hero-Logan-Monteith

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 Lewis Edmundson

LewisEdmundsonFeaturedNFChampionPhoto

"Lewis was diagnosed in 2004 with NF2, he was just six years old. From the age of five months, his dad and I knew that Lewis had something wrong with his eye and after five and a half years of horrendous tests he was eventually given a craniotomy. The result was that the meningioma had managed to grow in an inoperable place in the cavernous sinus region. It went on to weave itself into the carotid artery."

"He currently has 14 tumors of which two are inoperable. The latest inoperable tumor is on his sciatic nerve and is growing. He has ptosis, blindness of the right lid and eye, muscle wasting of his left arm and right leg, and mono neuropathy of his left hand and right foot."

"Lewis has had double eye surgery, brain surgery, leg surgery, foot surgery, and spine surgery, yet he manages to make us smile every day. He is our inspiration, with a fabulous sense of humor. Nothing really seems to bother him and he enjoys life to the fullest. Lewis is now 16 and his favorite activity is visiting theme parks and riding the biggest roller coasters he can find. He is definitely our hero."

-- Joanne Edmundson, Lewis' mother

 

Lewis Button

 

 

Our NF Heroes (7)

Matt Camacho NF ChampionNF-Hero-Alex-Owens

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 Logan Monteith

Logan Monteith - Featured NF Hero"My little Logan is eight. We found out that he had NF1 when he was three months old, at which point I was actually diagnosed with the same disorder. I had no idea what NF was or what we were about to enter into. I've never had any problems with it.

"At the age of three months, Logan was growing fibromas in his windpipe and was gasping for air when he nursed and slept. Once we knew what NF was all about and how to handle it, we were able to make his daily struggles a little easier.

"Logan has developmental delays. He sees occupational, physical, and speech therapists and thinks we are going to play every time. He has such a positive attitude.

"He has had multiple MRIs and tests to make sure that his little body is not being taken over by tumors. He is not even on the charts for growth he is so tiny.

"I am very proud of my little man. He is pure joy and has a completely optimistic attitude. I love him with all my heart, I could not have asked for a sweeter little boy. My husband, Ryan, and I are constantly amazed by his infectious smile and his spirit. He even wants to be a doctor when he grows up so that he can help other sick kids. He is our little hero."

-- Christa Monteith, Logan's mother

 

Logan Button

Contact Us

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

Phone: 212-344-6633

info@ctf.org