Life of NF

Jaxon sees NF appointments and challenges as an interruption to the life he wants to live.

He’s had 150 months of chemotherapy, seizures that stole his independence, and a tumor that took most of his vision.

Yet, because of that chemo, he still has some vision. He gets to live his dream college life in the dorms. He shares his stories to help other kids going through medical challenges. And he continually surprises his classmates with his karaoke skills.

When you ask Hayley what it’s like to have NF, she says her story is still being written.

As a teenager, she (and her doctors) wondered why she had constant pain. Eventually, they realized that there are tumors along her spine. Her ambition to better this world through promise and hard work motivated her to earn both a Bachelors and a Masters Degree.

She works at the same hospital where she was born and has received treatment. She wakes “up every morning blessed that she is here to spread her message, here to work towards her goals, and here to make a difference. And she can’t wait to see where her life can take her; NF doesn’t define her, but NF is a part of her.”

Carter says “If someone asks me what it’s like to have NF, I would say that it sucks because whenever I have to get surgery, I’m out of work.

And then it feels like I’m starting over from square one each time.

I have had surgery 14 times in my life. Can you imagine starting over that many times?

The only positive thing about getting surgery is the ability to donate tumor tissues for NF research. II like doing this because I want it to be used for research to hopefully find a cure. 

For Jackie, having NF represents who she is today.

Having NF has its ups and downs due to her experience with having cancer at the age of 14. She is almost13 years cancer free.

The struggles she had during school have not stopped her from success. She is thriving and continues to pursue her academic and career goals.

Jackie said, “I have such an amazing support around me that I’m thankful for everyday. I have met so many other young and older adults who have NF as well and it’s an amazing feeling to be able to connect with them and not feel alone.”

Neurofibromatosis is challenging for Terri. She says “I have NF but NF does not have me. I truly believe if God wanted me to blend in with others, He would not have created me to stand out. In spite of the challenges that come with NF, I choose to shine and not whine.”

Meet Sunny.

Sunny is pretty lucky. She lives a fairly normal life with NF. She has a bachelors and a masters. She doesn’t have too many noticeable fibromas, tumors or deformities.

So when she found out that her unborn son had NF, she prayed he was going to have the same experience. Unfortunately, that was not the case. When Noah was 11 months old, Sunny and her husband noticed that one leg was slightly longer than the other. This was the start of numerous doctors’ visits just to figure out what was going on.

Now, at the age of four, Noah’s childhood is marked by surgeries, medical appointments, and countless hours spent traveling to specialists. While his best friends run around, Noah is learning the ropes of medical procedures and enduring lengthy waits in doctor offices.

It’s not all bad; Noah gets a new toy for every doctor’s appointment and surgery. He even has a trick. He learned that he can stand on his longer leg to bypass some of the height restricted rides at Disneyland.

What is life with NF like for Theresa?

This is called Neurofibromatosis and I hate it. I was 35 when I learned I had NF1 .I found out when the doctor noticed my son had birthmarks all over his body, and I had some tumors on my body. It was a hard concept to take in, I knew nothing about NF, so I looked into this. The more I read , the more difficult it was for me to read on. It scared me to know all the problems that NF causes, and what my son was going to have. I worried for him with all the challenges he was going to go through. Like me as a little girl, school was hard for me. I made it through school and graduated. It wasn’t easy but now I needed to find work. Another challenge I had to go through qas not knowing I had NF and that it was the cause of my disabilities. I hate this NF, And these tumors that pop up.I have no control of. 

I hated looking in the mirror because of these tumors. That’s all I saw, what were people thinking is that what they see? My friends and family saw me, not these tumors. I’ve been having them removed, so far I’ve had close to having 30 removed from my face.  I’m so happy, learning how to cope and understand this NF. Having tumors removed is making my life easier. For the first time in years I can look in the mirror and like what I see,

I knew no one that had this at the time I was alone, scared, and (WHY?)  It was a long time not knowing anyone UNTIL I met a friend whose son has the same thing as me, I’ve learned a lot, YES it’s still hard for me to conceive this, I admire the young man who has left home and has gone to college. I’ve learned a lot from him; how brave he is. I’ve met a wonderful lady who has the same thing as me. 

Having good friends who care for (me,) who keep telling me they see me, not the tumors.  For the first time I feel I have friends who like me and are not judging me from these tumors.  

What does having Nf mean to Darla?  

As of today 4/22/2024, it is like a ball and chain, I am a prisoner within my own body at times. With that said, I will still push forward and continue to live and enjoy life to the best of my abilities.

Although life has not always been this way. I was diagnosed at the age of 2 at the time. I had minor cafe marks, a slight difference in leg size, and difference in leg length.

Physically over the years tumors grew, bumps and lumps appeared, and now my left leg is taking over my body. My left leg is 3-4 times the size of my right leg. I am in the process of talking to doctors about amputation at the hip. 

During school, I was bullied. I did not participate in many school events. I did have learning delays, an IEP, speech therapy, and adaptive physical education. I finished high school and went to college where I studied child development. I worked as a nanny and then as a preschool teacher for about fifteen years. 

I am unable to carry my own biological child; however, I participated in raising three children who are now grown. I also have three growing teens who are thriving and keeping me busy as they all play baseball and softball. Nothing is going to stop me from being on the sidelines in the stands cheering them on as they chase their dreams. I do this from my wheelchair with a blanket on my lap as if it covers my ginormous leg. I, as well as my children, endure all the stairs, snickers, name calling and bullying by adults and children. We ignore the best we can and keep pushing forward with a smile, being thankful for another day to live  

I continue to be as active as I can, pushing the limits, traveling with our bus (my leg is too large to travel any other way), keeping up with life as normal as I can.  Defying all odds stacked against me and letting it be known I have NF it does not have me 🙂