A Letter to My Son, From an NF Dad


Dear Jack,

As I am writing this letter you are almost 7 years old. When you were 2 years old you were diagnosed with Neurofibromatosis Type 1, or NF1. Needless to say this came as a shock to your mother and me. You were a perfectly healthy and happy little boy, but the doctor noticed you had quite a few birthmarks and mentioned NF may be a possibility.

After a couple more visits with some specialists, the diagnosis was confirmed.

We had never heard of neurofibromatosis, and all the information on the internet tends to be pretty scary. I saw and read some things that as your dad, I would have rather not seen.

NF1 is a genetic disorder of the nervous system that affects how nerve cells form and grow. It is more common than you might think, affecting about 1 in 3,000 people worldwide, more than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined. NF causes tumors to grow on nerves throughout the body and can potentially lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain.

The worst part of this condition is its variability and unpredictability.

I know this all sounds scary, Jack, but I don’t want you to worry too much or let NF control you. The odds are actually good that you will have a mild case and will live a long happy life with perhaps only a few small bumps on or under your skin. Some people are not even aware they have it. About two-thirds of cases are mild or moderate, and most people affected by NF1 live normal, productive lives.

I spent a lot of days crying after your diagnosis. I felt guilty, like maybe something I had done had led to this. In a way, I guess I wanted it to be my fault… for there to be an explanation. At least then, I could understand this. But in the end I realized this was just chance. It is nobody’s fault.

It is just the random, messy and unpredictable nature of reproduction.

I’m aware bad things sometimes happen to good people and the world is not always fair. But I am a huge believer in looking at the bright side and making the best out of every situation. There are many people who adhere to the philosophy of “expect the worst and hope for the best”… but I never really understood that. Why would you want to go around expecting the worst outcomes in life? I’m also personally not a big fan of hoping — it has never seemed to produce better results than random chance.

I prefer a different philosophy. I heard a quote a long time ago from an old basketball coach named John Wooden, “Things turn out best for the people who make the best of the way things turn out.” Pretty simple huh?

I’ll give you an example of how it works: I’ve come to realize that you probably could never have existed without NF. It is as much a part of you as your intelligence, brown hair and blue eyes. A different combination of reproductive cells would have produced an altogether different human being. I think the only way for the one in a gazillion human being that is you to exist is with NF.

I’ll take a life as your dad even with NF over a life without you.

man standing with and family

As of now, you are aware that you have a condition called NF. You know this is the reason for your “spots” and that you may get some bumps on your skin as you get older. I struggle constantly about how and when to tell you more about NF. I wish every time I look at you that I can take this burden, however heavy or light it may turn out to be, and carry it for you but I know I cannot. What I can do is to be the very best dad I can be and to make sure of the following:

That you have a strong sense of self-worth.

That you realize what is on the inside is infinitely more important than what is on the outside.

That you have patience with those who do not understand your condition.

That you have the confidence to hold your head high.

That you have the compassion to help others who may not be as fortunate as you.

That you have the courage to stand up for yourself when the time comes.

That you possess the dignity to handle whatever life may have in store for you.

That you are full of hope, wonder, curiosity and optimism.

That you have the strength to never give up.

That you have the fortitude to make the best of the way things turn out

As I mentioned before, the fact that you were born with NF1 is an accident of genetics, but I am confident you will make the best of this and be able to make a difference. Over $30,000 has already been raised in your name to fight NF! Maybe you’ll be a famous baseball player who brings even more awareness to NF, or better yet, a doctor who helps find treatment options or a cure, who knows?

What I do know for sure, and you can take this to the bank is that you will never have to fight this battle alone. All of us will be with you every step of the way. We will share in your heartbreaks and your greatest triumphs because we love you.

You are a very special little boy.

With all my love,
Dad

Gregg Donohue has raised thousands of dollars for NF research through multiple NF Endurance events. His son Jack loves Superman and playing hockey, golf and baseball.

This post originally appeared on the Children’s Tumor Foundation blog.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by master1305.

TOPICS
JOIN THE CONVERSATION

Related to Neurofibromatosis Type 1

little boy eating a bagel

Feeling 'Stuck In Between' as a Mom to a Child With a Rare Disease

If you search the internet for “parents of special needs children,” you will find a multitude of blogs, articles and books on the topic. They share stories of doctors’ appointments, treatments and financial woes. Many parents reach out across the country bonding with strangers over shared diagnoses and experiences. Support groups are found all over [...]

The 'Scanxiety' I Live With as a Parent to a Child With NF1

He was 4 years, 3 weeks and 5 days old when I left the hospital with a piece of paper with the words “neurofibromatosis type 1” scribbled on it from a doctor I had only just met. The more I Googled, the more upset I got. Would you not be anxious if your baby was diagnosed with an incurable [...]
Dyan holding her daughter

To Those Who Pity My Daughter's Condition

To those who pity my daughter with neurofibromatosis, Dyan and her daughter. I hear your hushed voices when you don’t think I’m listening. I see you looking at my daughter with your sad stare. I hear the pity in your voice, and the things you say swarm inside my head. Aw, poor, sweet girl. What’s going [...]
Young woman walking by canal under a bridge

Why I've Accepted the 40-Year Journey to Receive My Rare Diagnosis

I remember the day I couldn’t see out of my left eye. I became obsessed with waving my hand in front of my face, searching for the sweet spot where I could make it disappear. Earlier that year I suffered through a bout of idiopathic uveitis. Believing it had returned, I went to the ER expecting to [...]