Living with an illness can be extremely stressful at any age, especially when you don’t know what to expect. Before we take our son Carter to his NF appointments we think about questions we should ask. Afterwards we wonder if we asked the correct questions, and did we ask everything we should have asked.
Our son, Carter, now 3 years old was diagnosed with a spontaneous mutation of Neurofibromatosis (NF) when he was two months old. When Carter was eight months old he had surgery for Hydrocephalus and had an Endoscopic Third Ventriculostomy (ETV)done. Today he is doing great. He receives six hours of therapy a week, two hours each of speech, physical therapy and occupational therapy. We believe his therapy is why he is doing so well. Before Carter had his surgery, we didn't look too much into NF. Our physician had explained NF to us and we decided we would do the “wait and see” game. During our three-week stay in the hospital when Carter was eight months old, We had a lot of time to think. We were scared and realized we wanted to learn more about NF and the effects it might have on our son. We spent countless hours reading books and researching the internet.
We had a desire to network with other families, but had no one to turn to. At that time, we realized the psychological need for local support. After getting home from the hospital feeling relieved and realizing how much help we received from medical professionals, friends and family, we wanted to give back to others by providing a source of information and support.
Just remember you are not alone. We welcome everyone who visits our website and look forward to many new friendships.
Brian and Debbie Bell
Shannon Lee Gentile
I will try to make a very long and sad story, short and inspirational. More than 19 years ago, my older sister Shannon, was diagnosed with Neurofibromatosis Type 2. At the time, she was 15 years old and everything that she knew and understood about being a teenager changed upon her diagnosis.
At 16, she had her first two open brain surgeries removing Acoustic Neuromas from the left and right side of her brain. The surgeries took her hearing, her balance and left both sides of her face paralyzed. Tragic though it was, she stood strong and graduated high school, sign-language interpreter in tow, with the rest of her 1988 classmates. Over the next 17 years, Shannon was in and out of the hospital more times than I can count.
These are some of the treatments and NF Type 2 complications that Shannon suffered from:
- Tumors removed from her upper spinal region
- Partial eyelid closures to prevent cornea damage
- Removal of vaginal tumors
- Removal of lower lumbar spinal tumors
- Removal of a Meningioma tumor on the brain
- Had many Stereotactic Radiosurgeries
- Suffered from seizures
- Paralyzed left vocal chord; which caused an inability to speak and swallow.
However Shannon pushed on and accomplished more in those 17 years than most people do in a lifetime. She received her Associates degree in Applied Science from the National Technology Institute for the Deaf. Upon her return to New Jersey, she began working at the Environmental & Occupational Health Sciences Institute at U.M.D.N.J., doing medical research on Cancer. She, along with her department, was published in "Biochemical Pharmacology," along with many other well-renowned Scientific Manuscripts and Abstracts. During that time, she went back to school, part time, and received a Bachelor's Degree, from Rutgers University in English. One of her short stories, "The Challenge" based on a young girl's struggle with her deafness in a hearing world, was published in "The Podium", the very prestigious Rutgers Literary Magazine.
Shannon Lee Gentile, age 33, passed away in the early morning of April 29, 2004 from complications of NF Type 2.
I am here for Shannon and the many others who suffer from both types of the disease. Shannon was a fighter, not a victim. Therefore in her absence, I will fight for you, the patients, and the families. I will not stop until awareness reaches everyone in the United States. I will not stop until we, the NF Families, get better treatment from Doctors and Insurance Companies. My individual goals are to build support groups, increase our medical networks, open a California camp for adults and children, develope "The Shannon Gentile Medical Travel Fund," which will provide patients and their families a means to see specialists outside their area. I am here for YOU!
Thriving with Neurofibromatosis - Jaxon
Life is full of defining moments —experiences which color our world—comparable to viewing life through tinted glasses. The diagnosis of Neurofibromatosis is one of those moments.
Our four year old son, Jaxon, was diagnosed with NF1 last November. Since then, we have mastered the spelling of Neurofibromatosis and even our six year old can say "chiasmic/hypothalamic glioma." Although the thought of a brain tumor still catches me off guard sometimes, I have found that it isn't the life sentence I had expected.
Overall, Jaxon is a happy child. His eyes sparkle and his smile is intense. He loves to learn and calls every adult "teacher." All children are automatically named "friend." He loves to sing, recite lines from movies, and collect rocks. Doctor appointments are a part of his routine. He has an excellent memory, knowing which rooms in the children's hospital are fun and which ones are scary. He sincerely tries to be an obedient child, yelling "Mom can I get up?" every morning, the moment he sees the six on his digital clock.
Our perspective of time has certainly changed. We appreciate it more now. We have been reminded that health is not guaranteed and that anyone can develop medical issues at any moment. Jaxon and other NF patients have the advantage that their physicians know which complications to watch for, increasing the likelihood of early detection and treatment.
Neurofibromatosis has definitely altered our view of the world—giving us a new perspective. And, in addition to teaching us new medical terms, it has helped us redefine words we thought we knew - empathy, gratitude, and joy.
I Love You, Mom
I love you, Mom
You are like an angel in the sky
You are beautiful in many ways
You are like a rainbow in the sky
You are so beautiful like Cinderella
You are like sunshine in the sky
You are like a rainbow bird in the sky
You are like a cheerleader at the
Zoo, cheering for your favorite animal
You are like a tree growing apples and oranges
You are like a box with a red bow on top of it
You are like a big rainbow cross in heaven
You are like God and Jesus
Because you take care of people
You are so cute and beautiful
I love you very very much
My Daughter My Hero
My daughter in an amputee
she couldn’t walk until she was three
I was so fearful of days to come
but, she just shined like the morning sun
Doctors appointments, hospital stays,
took up many of our days but her smile just make it all go away
Karate, walking, running, jumping, and swimming,
were just some of the things she could do from the beginning
You see she is not just my hero but a true inspiration
of someone with heart and determination
To go on when life’s let you down
and to come back up again and rise with a crown!
Do you live with NF?
Do you know someone with NF?
We would like to encourage others with your stories of encouragement. To submit your story please send an email with your story, pictures and consent form to firstname.lastname@example.org.