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

Articles

Living with NF

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

Our NF Heroes - Alex - Dylan (6)

Dylan-Prosser-NF-Champion NF-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 Champion Matt Camacho

Matt-Camacho-Featured-NF-Champion

"I'm a passionate mother of a truly exceptional son! A son who is now 22 years old and has NF1.

"Matt is one of five of my beautiful boys. He was born with all the significant signs of NF1. My husband and I were fortunate to have served and retired from the United States Marine Corps in which we had exceptional doctors who diagnosed him with the disease and kept a watchful eye on him through his young life.

"Over the years, his medical conditions and life situations worsened with a vengeance. He lost one of his younger twin brothers, Aaron, to SIDS. Aaron's twin brother survives today with a spinal cord lipoma. As a family, we only became a stronger fighting unit; Matt always staying positive with his enormous, contagious smile. Because of NF, he had to have surgery for hydrocephalus, have three ventriculostomies, and three months later, a revision. Then the family was given the news that we should schedule a Make-A-Wish for Matt. Devastated, we did. Matt struggled on and fought this disease and taught us not to ever give up. His determination and positive attitude is why he is still with us today.

"Matt graduated high school and has finished a couple of college classes despite severe learning disabilities, many hospital stays, terrible seizures, and intense pain. He can't drive and struggles with body limb weakness but always has a positive attitude.

"Three years ago Matt's 27-year-old brother was murdered. Devastated and feeling defeated, Matt helped this family survive; he pulled us tighter together, reminding us that our job here on this earth was not done.

"Just after our loss, Matt developed severe disabling pain. He and I departed our small hometown of Prescott AZ to see NF specialists at Children's National Hospital in Washington D.C. Matt has tried clinical trial after clinical trial in hopes for a cure. He has had near death experiences but he always tells me, 'Mom, if I die from one of these trials, then they will know that it doesn't work and parents won't go through the grief and loss that you and Dad have. If I die not trying them, than I will not die being me.'

"Matt has an intrathecal pain pump now, but it doesn't touch the pain. In May of 2014, he had surgery to debulk tumors in his cervical spine and a spinal cord decompression. As I write this, we are back in Washington D.C. so that Matt can participate in a new clinical trial for the drug XL184. Matt's been informed he may only have mobility for approximately four more months. He has tried the Peg interferon, Gleevec, Thalidimide … all have made things much worse, but he still has such a smile on his face.

"He came back from Brainy Camp this summer with a blown out knee but the 'Most Positive Spirit Award.' That's my boy! He wants to be a Brainy Camp counselor next summer! Every single day he reminds family, friends, even strangers, that life is not about how long you are here, it is about what you have done to make it better for yourself and others around you.


"That is our Matt. He is a true NF Champion and our Camacho family hero, with two very special Camacho Angels leading the way!"

 -- Kat Camacho, Matt's mother

 

Matt Camacho

 

 

NF Hero Alex Owens

Alex-Owens-B"Alex was named after Alexander the Great and, like his namesake, he is a fighter. Although he doesn't stray too far from his mom or dad when there's a crowd, at home he shows no fear playing ball and wrestling with his five-year-old brother. He thinks he's invincible - and with the help of Children's Tumor Foundation research, he will be. Alex was diagnosed with NF1 in February 2013 when he was four months old. He has been raising NF awareness and inspiring our community to support the Children's Tumor Foundation ever since; charming the town with his big brown eyes and his infectious smile."

"Aside from a brain tumor scare in May 2014, Alex's symptoms have been relatively mild. He is a very happy boy despite the occasional pediatric migraine, and we think his 23 café au lait spots and the freckling under his arms are cute. As energetic as he is, Alex also enjoys his downtime. Games of "peek-a-boo" or "this little piggy" are always welcome but, by far, his favorite activity is cuddling on his parents' or grandparents' laps with a stack of books. He loves to read and it keeps him entertained for hours."

Alex-Owens-A"Alex is a kind and compassionate toddler who likes to share and show affection. Although we do not know what the future has in store for him, we are committed to helping him live a normal life while raising public awareness and funds for neurofibromatosis research. My child, like the millions worldwide who also live with NF, deserves the opportunity to live a long and pain-free life."

- Diane Owens, Alex's mother

 

Alex Button

Our NF Heroes (Emmersyn Anna ) (4)

Anna Harland Emersyn Adsit

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