An Open Letter to Ryan Murphy, et al.

An open letter to Ryan Murphy, Brad Falchuk, and Ian Brennan, creators of “Scream Queens”, and Rupert Murdoch, CEO of Fox 

Dear Sirs,

It has come to my attention that the latest episode of “Scream Queens,” entitled “Warts and All,” prominently features a character (described as “hideous” in the episode summary) who states that he has Neurofibromatosis Type 1. While I understand that the Chanel characters are always horrible people, I take issue with the episode title and description, as well as the line the NF1 character, Tyler, utters: “Look at me, I’m a monster!”

You see, my 2-year-old son, Benji, was one of the 1 in 3,000 births in the U.S. in 2014 who have NF1. I do not appreciate perpetuating stereotypes about the more visible (and rare) aspects of his condition. His life is complicated enough, given that he has increased chances of vision- or life-threatening brain and nerve tumors, repeated MRI scans to keep an eye on these things, and a 1 in 2 chance of dealing with learning disabilities once he reaches school. The last thing he needs is for shows like this to show his genetic condition in a negative light, treating him as some sort of beast to be rejected. The title is also misleading; NF1 causes tumors, not warts.

I am surprised that a show created by the makers of GLEE, a show that prided itself on teaching tolerance of groups that are often marginalized (LGBTQ, the disabled), has chosen to spread misinformation on one of the most common genetic disorders, implying that a C02 laser can easily take care of an extreme case of NF1 tumors. Between the fact that they can often grow back and that they also are commonly plexiform, or are wrapped around nerves and thus inoperable, this gives the misinformed public more ammunition to hurl at an unsuspecting person with NF1: “why don’t you just get them bumps zapped off?”

My concerns are already founded if you take a look at a few online recaps of the episode. One writer only referred to Tyler’s character as “Bubble Man.” I feel fortunate that my son is not visibly affected by the condition yet and may never develop the subcutaneous tumors featured on your show, but I shudder to think of what remarks may meet the students with NF1 from classmates having been presented with the “monster” of Tyler. Will they start asking their classmate if he or she will look like that? Children with NF1 are more likely to have executive functioning (organization) problems as well as stress and anxiety; you have done these children a disservice by spreading fear and ignorance with your popular platform rather than using it to educate and teach tolerance as you have in the past.

You still have a chance to make this right. Create a PSA to air at the end of a future episode sharing correct information on the condition, its commonality and its treatment options. Encourage viewers to find correct information at credible sources such as the Children’s Tumor Foundation (CTF.org). You can make a donation to a local Cupid’s Undie Run to raise funds for research and awareness for those fighting NF. Better yet, participate!

You can do better than this. Please return to your better instincts rather than portraying a real condition dealt with by about 100,000 Americans, including children, as a candidate for a freak show.

Sincerely,

Kristine Parker

Shock/Believe

This past Saturday on a long run, I passed a derelict building that blemishes an otherwise lovely running path I frequent near my home. The shattered windows form an atlas of some long-forgotten land. Weeds and grass have started to reclaim the surrounding pavement. Jagged half-walls mark the former outline of the building. Taggers have come and gone, leaving various shades of spray paint on any available surface.

Jogging by, two words jumped to the front of my presence from a former second story room. The first, in large, flared, urban, perhaps gang-like style, read SHOCK. Another, much smaller but still quite legible, in thin, block lettering, proclaimed BELIEVE.

SHOCK. This is a common emotion for me in my journey as a mother of a child living with NF. At his MRI scan in March, we discovered that he has a very small optic glioma, a benign tumor on his right optic nerve. This may or may not grow. It may or may not affect his vision. It may or may not become malignant. We have no way of knowing. Once an NF patient is shown to have a tumor, he or she gets on a regular consulting schedule with a pediatric oncologist, even though he or she may never develop cancer. Just in case. After viewing his scan, our oncologist determined that his tumor was too tiny to need any treatment for now. We would re-scan in 6 months and see if it has changed at all.

Well, tomorrow is Benji’s 6 month re-scan. A word I have learned since my son’s diagnosis is the term “scanxiety.” This is a real condition, which is the feeling of extreme stress and worry over your child’s MRI until the doctor tells you what he or she sees in it. Despite the fact that the rational side of my brain knows the chances of anything changing drastically in six months are small, I still have moments of worry that it has suddenly ballooned to the size of a golf ball or larger. I worry that every little stumble, any slight wink in his expression might be a sign of a new tumor. I worry about having to watch my son go through chemotherapy to shrink a dangerous tumor. This is the main treatment for a tumor deemed to need it, whether it is malignant or not. There are people working on less invasive, more effective treatments, but these are not yet widely available. So we wait.

BELIEVE. The funny thing about scary stuff is that it makes you really see how strong you can be, if only because you want to hold it together for your kids. My boys don’t have much idea about what’s going on with Benji medically. The older two have been told he’s small for his age and he might take a bit longer to learn to do things like walk and run. But they still adore him and treat him like they always have. It’s just their parents who try not to lie awake at night worrying whether Benji will have a normal life.

img_5496But I believe. I believe in the expertise and genuine care we’ve found at Children’s Hospital. Every person we have worked with there has been extremely kind to Benji and patient with our concerns and questions. They have always made all of us as comfortable as possible.

I believe in the power of prayer. I lifted Benji up before his scan in March and my congregation celebrated with me when I told them his scan turned up the smallest possible result short of nothing. I hope to be able to share more good news next time. I do believe that whatever happens, our church family is behind us and rooting for Ben.

I believe in the strength of our family. Our parents (Benji’s grandparents) have been amazing and supportive from diagnosis to now, and our extended family also sends loving vibes from afar. Bill can make me smile in any situation, and I feel certain he’ll work his magic again at least once tomorrow.

I believe in Benji. He is an amazing child. He has come so far, much faster than anyone expected. He is nearly running when he didn’t really take independent steps until mid-May of this year, at nearly two years old. He has met nearly all of the gross motor milestones he has been chasing for months. He has a large vocabulary and will show it off at any opportunity. He has the world’s best laugh and pat-pats. He loves songs and he plays the kazoo. His temperament is so sweet, he is rarely upset or sad. His most common expression is “okay, Mommy!”

I believe that no matter what may be ahead for him, Benji will meet it with a smile.

And we’ll be smiling with him.

World NF Awareness Day.

Last year at this time, I had no idea that the little life I still carried inside me had a genetic disorder. Like any mothIMG_3814er, I hoped and prayed he would be healthy. And he is, he just has more things that could potentially go wrong for me to worry about than your typical child.

When my son’s doctor first mentioned that he could be showing signs of having NF, I had never heard of it. Neither had my family. Neither, I’m sure, have most of my friends. It is amazing to me that so many people are affected by this disorder, but so few people have any idea what it is. One of my reasons for starting this blog is to spread awareness of NF, and hopefully increase public support for research to try to find a cure for it someday.

Neurofibromatosis can cause a benign tumor to form on any nerve tissue, anywhere in his body, at any time. So far we have not noticed any, but there is no telling if or when he will develop them. Rarely, these tumors can turn cancerous, but there is no way of predicting this. There is no test that can determine how severe any one case of NF will be. It can also cause short stature, development delays, and learning disabilities. So far, Benji has the first two of these qualities. Time will tell if his height is permanently inhibited or if he is just slow to grow for now.

IMG_3803Aside from being small and a bit behind in motor skills (although he has already made great gains in the past month), Benji looks like a normal baby. He is developing his sense of humor. He loves the swings at the park. He is starting to babble more each day. I’m working on not letting fears for the future intrude on my time with him now. One day at a time, I’m going to give him the best life possible, just as I do for my other boys.

If you are reading this blog and are just learning of NF, please honor my son and the 1 in 3,000 people who are affected with NF by sharing this with others. We need this disorder to be known and we hope and pray for a cure. If you want more information, please visit CTF.org. Thank you for your support.

Four Missing Letters

That’s all that makes the difference for my son. One copy of the gene associated with NF is missing four letters out of 350,000 base pairs. Four letters have turned his life upside down.

Of course, he was born this way. We have only just learned what was already inside of him.

We spent the better part of today at the hospital. I held Benji’s foot as he screamed for five of the longest minutes of my life inside the MRI machine. We talked with the NF specialist, who reassured us of the variability of the disease and that he is still fairly likely to have minimal symptoms. Then we talked with the neurosurgery department, and they assured us that there is nothing of concern about his large head size at this time. For now, we can chalk it up to the fact that both sides of his family have large heads, and also that large head size is a common quality of people with NF.

On the positive side, this knowledge is power. We will keep up with regular doctor appointments to make sure no small problems get too big to manage before we find them. This means that he will see his NF specialist again in 6 months and he will have a full MRI to check for any major changes in his brain or spine in 9 months.

In the meantime, we will love on him. We will let him be the sweet baby he is. We will give him the therapy he needs to build up his strength and catch up with his peers’ motor skills. We will try our best not to let worry get in the way of this love.