Life With Neurofibromatosis

Medically Reviewed by Brunilda Nazario, MD on October 26, 2025
5 min read

By Diane Owens, as told to Michele Jordan

Every parent dreams of a world where their child has few, if any, problems in life. But when your child is diagnosed with an incurable disease, your playbook must adapt.

I found out I was pregnant with my son, Alexander, on Valentine’s Day 2012. I had a bad cold and didn’t feel right. Before I took cold medicine, I figured I should take a pregnancy test. It was positive. We (my husband, my older son, Justy, then 2, and I) were so excited!  It took us a while to get pregnant with our first, so our second was such a wonderful surprise — a true gift from God. 

Alex was born that October, and I had the easiest labor you could have. About 15 minutes after my husband arrived, I delivered another beautiful baby boy.

At Alex’s 2-month-old checkup, I pointed out some spots to the doctor that I thought may have been birthmarks that I missed as a sleep-deprived mom. Alex didn’t just have one spot, however, he had many – about 12. I would later learn that these are called café au lait spots because of their color and are often the first signs of neurofibromatosis (NF). We have an amazing pediatrician who referred me to several specialists, who later confirmed that Alex did have this diagnosis.

What they don’t always tell you when your child is diagnosed with a serious illness is that your reaction may not be one built on emotions. I work in IT, and I tend to think in a very process-driven way. I wanted to know my KPIs (key performance indicators)! The doctor told me not to Google it, but of course I did! I wanted to apply Six Sigma thinking (a methodology used in business to minimize errors by analyzing data) to this and use all the logic I could muster to figure it out. I needed to know “what now?” 

While I got lost in a world of research and facts, my husband felt the heaviness of the diagnosis and the information we learned early on.

infographic on types of neurofibromatosis

A lot of the advice for parents of children with NF is “watch and wait.” But that’s not how my brain works. I need to do something.

In the earliest of days, I was so grateful that we were able to connect with the Children’s Tumor Foundation (CTF). They gave my family hope, direction, education, and opportunity. Instead of focusing on the areas of Alex’s disease that I could not control, they helped empower me to see what I could do. One such thing was signing up for a run/walk for NF. This was way outside of my comfort zone, and I knew my family and friends would pay to see me run! 

I’ve run every year since Alex was diagnosed. It’s also a family affair.  My husband, Jeff, cheers from the sides and co-hosts an annual golf tournament fundraiser. My older son, Justy, started doing the kids’ fun run when he was 4 years old. He’s done it every year and will be 16 this year.  He’s made some great videos over the years. I’m honored that our family has helped to raise thousands of dollars for research for neurofibromatosis. I tell everyone that each dollar matters. Funding has unlocked research that has paved the way for several new drugs for NF.

 

Alex has always known he has NF. We’ve never made him think he had anything wrong with him. But he’s had his challenges. He’s had tumors all over his body and pain in some of those tumors. He’s had surgery to remove tumors from his head (not his brain). Thankfully, he healed quickly, but these tumors can come back. Still, things could be worse. Many people with NF have serious vision issues. I’m thankful that so far, this is not the case for Alex.

Sometimes, the harder things are what I call the softer symptoms. At the end of the day, he can hide most of his tumors well. He can wear a loose T-shirt. What can be harder to explain to teachers, family, and other parents is that he is socially a little behind his peers. I tell teachers, you can’t speak as harshly to him. He’s sensitive. Despite this, he does well in school. Other invisible symptoms are problems with sleep. Alex has had trouble sleeping for years. How do you explain this to a teacher when he’s falling asleep in class or not as lively for his friends?

These days, Alex is doing well on treatment, and we take each day at a time. I remain grateful for organizations like the Children’s Tumor Foundation. They keep me in the loop on new information and respond to whatever I note as a passion of mine to get involved. I recently expressed my interest in advocacy, and the next thing I know, I’m in D.C. advocating for more funding for NF. I’ve shared my views with researchers and policymakers, and I’ve seen real change.  

I will be honest and say there are tough days being a parent of a child with NF. I sometimes wonder how we’ve made it, but we have. Our faith is very much a factor.

I now have the chance to speak to other parents of children with NF. I tell them NF is not a death sentence, but you will never know your child without NF. Nurture them. It’s just as much part of them as the color of their eyes.  Continue to celebrate life. Alex is celebrating his 13th birthday soon, and we’re doing a race in Chicago, going on a murder mystery ghost tour, and an underground doughnut tour! He’ll see one of his friends with NF there.

Alex is named after Alexander the Great. He’s had great challenges but has also known great love and indescribable blessings. Finding out I was pregnant with him on Valentine’s Day still seems fitting today. Despite his challenges, he’s known an incredible world surrounded by love.