A day in the life with neurofibromatosis

Dara Squires
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My youngest son will soon be six years old.

Today, I sorted through some of his clothes, hoping to eliminate some outgrown stuff.

The thing is … he hasn’t outgrown any clothes in almost two years. I don’t remember the older two going so long between growth spurts.

I made sure what I kept was the soft, smooth clothing as he’s been complaining “why am I always itchy” in the mornings.

I use only hypoallergenic detergent, soaps and shampoos, so soft clothing is just an extra measure. His sister is pretty sensitive too.

Tonight I will work with him on his writing. His penmanship leaves a lot to be desired and the act of writing itself seems to confuse him.

His brother still can’t write legibly either, though. Although his brother also struggled reading at his age, he’s now a strong reader.

Maybe I have nothing to worry about. Maybe he just hasn’t hit his growth spurt, is sensitive like his sister, a different learner like his brother. Or maybe he’s experiencing stunted growth, itchy skin, and learning disabilities — all symptoms to be expected given his condition.

My son has neurofibromatosis Type 1 (NF-1). And we are lucky.

Not lucky that he has the disorder, not in any way. But lucky in that all of his symptoms right now are maybe neurofibromatosis and maybe just normal quirks of a growing boy.

Friends have children who aren’t so lucky — they have optic and brain tumours, tibial dysplasia (bowing of the leg bones that requires multiple painful surgeries), facial tumours, severe learning issues, severe growth restriction … the list goes on.

For a child with neurofibromatosis-1, the list of possible problems is endless. And for a parent, so is the worry and fear.

Right now, we’re lucky. But that can change. It probably will change. And it’s hard not to think of when and how it will change.

My son leads a normal life. He does well in school, has plenty of friends, is, as he says, “the cute one” and a real charmer. He gets into mischief and trouble just like his siblings. And he’s not embarrassed or ashamed of his “spots.”

The other day my eldest son informed us that his little brother always “looks dirty.” It was like he was noticing his brother’s spots for the first time. He’s entering that age where he’s finally starting to take some interest in personal hygiene and in appearances. I reminded him of his brother’s spots and how we’ve talked about people looking different and that at some time his brother may look even more different because of his disorder.

But when my youngest reaches the age his brother is now, I’m not going to be able to explain all that to every child he meets. When his peers start noticing and commenting on appearances, will his spots still show so much? Will he have developed skin tumours? Will he still be smaller than his peers with a larger head?

Of all the worries that come with his diagnoses, some of my worst are the social ones.

It’s already known that children with neurofibromatosis-1 will likely suffer both learning disorders and social disorders. Add on a “different” appearance and it’s a recipe for bullying and heartbreak.

I guess because I’m lucky enough that right now I don’t have to worry about tumours or surgeries, I’ve latched my worries onto this.

As a parent, I often have to remind myself to let my worries go by remembering that there is nothing I can do — what will be will be.

I remind myself that I’ve been through plenty of difficult and stressful situations and I can face a few more.

But it’s harder when it’s your child who will have to face it. And it isn’t quite true that there’s nothing I can do.

While I always aim to give my child a “normal” life and not make his disorder a part of his identity, I also know that part of my job is to be his advocate and the general public’s source of information.

It’s a lot easier to explain that spots aren’t dirt or a contagious rash or anything to be afraid of or grossed out by when the person to whom you’re explaining it has at least an inkling of the real cause.

And that is why I speak out, why I mention his disorder whenever I meet someone new who asks about my family, why I write columns and posts about it.

It’s not because I truly believe the person listening or reading will do anything about it ... they won’t run out to donate money or personally cure the disorder.

But they will learn something and they will understand a bit more about my son’s peculiarities and his mother’s worries.

My greatest fear is that ignorance will cause someone — a possible friend, a likely girlfriend, a teacher, an employer — to make my son feel like there is something wrong with him. My son is perfect, it’s just his DNA that took a wrong turn. We can deal with the tumours and the issues and symptoms that may arise. It’s a lot harder to deal with ignorance and fear.

May is Neurofibromatosis Awareness Month. Consider yourself informed.

You can comment on this column or access previous editions of Readily A Parent using the following short link: http://bit.ly/DaraSquires.

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Recent comments

  • S.K.
    March 06, 2015 - 13:31

    Good to read your article. My 3 yr old son has NF1 and has optic gliomas and also a plexiform neurofibroma on his back. Just like you, I wait and hope that his conditions do not get any worse.

  • Sylvie
    March 06, 2015 - 02:49

    I am the " grand-maman" of an 8 years old boy name Coltin (Coco)with Neurofibromatosis. We were diagnose when he was around 2. I said "we" because it affects my whole family. He also has autism and has many tumours around the brain, neck, spinal cord and one ear. The doctors told us that they were not operable as there is to many in his head and along the optics nerves. He is full of life and never walk to where he wants to go but RUN .... lol On the outside of his body he has few tumors, one being a big eye. I believe that God only give you what you can handle. My daughter is an absolutly amazing mother to my beautiful Coco. She took courses so that she could help him with his autism as much as possible. Mission accomplish. He talks a lot and is so smart as to be a little genius ( in certain subjects), computers and the Internet are not a mystery for him. lol He has many breakdowns every day and it is so hurtful to hear the terrible comments from ignorant adults. I say adults because I've never heard a bad comment from a child, it always has been from adults and parents themself. The worse I heard was at a MacDonald playground from a father that said that kids like "him" should be put away from the public...... I am not a violent person at all but my sister had to restrain me because I was gonna lose it on that guy. Btw it is the first time I say anything about that evenement .... I have not even told his mom (my daughter) about that day, but it feels very good to tell someone how hurt and crush I was. Oh my!!! I've already took a lot of time from people who are reading this, and I thank you from the bottom of my heart for having sites like this. I LOVE my grandson more than anything in this world, not because he is sick or because I feel sorry for him but because he is a genuine beautiful little Prince that smile to anybody that he meets and never never judge them by what they look like. I love him so so much and enjoy every moments that I am with him.

  • bertha limon
    January 11, 2015 - 20:39

    thanks for you story my little girl is nf type 1 I hope they find cure fast

  • Mardy
    May 29, 2014 - 12:00

    Thanks for sharing your story about NF with the rest of the world. It's odd that NF is relatively common, yet not many people know about it. I volunteer for the Littlest Tumor Foundation in Appleton, Wis., and we specialize in advocacy, research, and support of children with NF and their families go to www.littlesttumor.org to learn more. Take care.

  • Mayra
    May 21, 2014 - 13:38

    I have the same worries, my son is 3 years old and he has NF1. He also has hearing loss, doesn't speak , and silent seizures . I hope they can find the cure very soon. Look in the internet for inspire team, they have a lot of members with the same problem and you can talk to them it can make you feel like you are not alone. Good luck

  • Ruth Lewis
    May 21, 2014 - 13:15

    My name is Ruth, I am 36 and I have NF 1. I was bullied and teased in school because of skin. And I still get comments today, even ones asking me if I am allowed to be in public with my skin the way it is. I have a tumor on my optic giloma that caused me to lose sight in my left eye and I lost the hearing in my left ear ... all this was at birth as far as my parents know. I also was recently diagnosed with Melanoma skin cancer when I had one of my moles "spots" removed and tested. People need to be informed more about how the way you speak to someone who looks different from them affects that person. To this day, I still hear all the comments from kids, "dogs", "eww", and even the worst one, "You have rabies!!" Those words sting .... to anyone reading my comment, learn about NF, educate yourself then go out and educate others, AND if you hear someone commenting to someone about their looks, don't just walk by, stop and speak up .... don't let others bully someone because they are different.

  • Sheila
    May 21, 2014 - 12:31

    I am the Mom of a 41 yr old daughter. She was diagnosed with NF at the age of 9 and we have been through so many surgeries due to the hydrocephalus which requires shunts to remove fluid from brain. Her tumors were not visible until she started into puberty. They have increased annually and are now very visible. She is very blessed that she has had no real issues in school and was very active in marching band. She is remarkable in her dealing with stares and comments, even more so than I am. She worked in the public until 2 years ago. She had a massive stroke, not related to the NF and is now considered disabled. She is married but has no children. She is amazing! We knew of no one with NF when we were going through her walk with this disease.