NF – Not Funny

Most of you who read my stuff know I love to laugh and can find plenty to laugh about no matter the situation. Yep, tragedy is often close to comedy. But sometimes the mirth is better left untapped. This is one of those times. Sane self is in charge and typing this post and painfully aware Neurofibromatosis is not funny, and if you read this entire post, you will know why. (I did try to make this piece funny in the interest of a good cause, but I just couldn’t do it. Catch me on the next post.)

I understand Richard Armitage has created a doodle for the NF Network’s Doodle4NF campaign on eBay which runs during part of NF Awareness month (May 7-17?). Bidding is now up to $1,625 as of this posting:

richard_armitage_doodleClick the image to see the ebay listing.

There are also several others associated with Hannibal who have submitted drawings including Bryan Fuller. It makes me wonder if someone working on the show has a friend or relative with Neurofibromatosis. Maybe someone has stated as much, and I missed it. Whatever the case, NF is a heinous disease but not one you hear about everyday. In fact, I knew nothing about it until a couple of months ago when our neighbors of sixteen years were telling us about their son grappling with it.

They were foster parents to him when he was an infant and eventually adopted him knowing he had severe medical issues. His birth mother tried to abort him on her own, and the impact of that made him severely mentally handicapped. But his adoptive parents didn’t know about the NF2 until recently when their son started to manifest symptoms. It turns out he inherited NF2 from his biological family (which I understand is how someone comes to have it), and a few weeks ago he had surgery to alleviate pressure around a cranial nerve. The surgery was merely a stopgap. He is currently fourteen years old but will have ongoing issues with this condition for the rest of his life, and I cried as his parents sat in my living room describing what he will be facing in future. You can read more about NF2 at the NF Network’s site. At the moment, I think I’ll start crying again to explain.

And whether you bid on the drawings, please consider giving to this organization. According to my neighbors, it has been a wealth of information and much needed support.

16 Comments

  1. From what I understand from a post at C19, Gillian Anderson is a champion for the cause and shared it with the Hannibal team. Her brother died from the disorder. She tweeted a thanks to RA for his pledge to match the final bid.

  2. Thanks for catching me up on that, Trudy!

  3. That also explains why Gillian Anderson’s daughter has a drawing in the auction.

  4. This is heartbreaking, Frenz. I’m so sorry for your neighbor’s son…. Thank you for your story and your plea.

  5. Very sad indeed. Prayers and good wishes.

  6. I had googled this when his tweet came up, and really had trouble pushing through the heartbreaking pain I saw. Thanks for sharing, Frenz… Also really appreciate Trudy clarifying Gillian A’s connection. Will have to check out donation process through the link, since I must settle for electronic version of his “diddly doodle” ;)

  7. Thanks for reminding us about this awful condition. I hope the money raised helps to make a difference. x

  8. What a sad story, but with a note of hope. It’s nice to see celebrities using their fame to raise awareness, and bloggers helping to spread the word.

  9. You’re right, Frenz. NF is not funny. Our pastor and his wife, ironically fostered a newborn baby boy 12 & 1/2 years ago and eventually adopted him. He has undergone chemotherapy for tumors on his optic nerve with a prognosis that he will eventually go blind; wears a brace on his severely crooked leg; has issues w/ his pituitary gland; suffers from developmental limitations. He is a brave young man and faces all his challenges head on. My heart was so full when I saw that Mr. Armitage was helping those affected with this horrible disorder.

  10. This is the disease John Merrick (the film The Elephant Man was based on his story) suffered from. Neurofibromatosis isn’t widely known and I wondered why this charity was chosen until I read Gillian’s tweet to Richard … I figured she must know someone with this disorder but didn’t know she lost her brother to it. I first heard of NF years ago when I worked at The Mount Sinai Medical Center in New York …. they started a research program and clinic there back in the early 1980s.

  11. I had forgotten about John Merrick! Thanks for the reminder. I probably heard the name of his disease at the time the movie came out, but I didn’t remember.

    I’m pretty sure Merrick had NF1, which first presents through the skin while NF2 is mostly internal and related to the nervous system. I could be wrong about this, but that’s generally how I understand it. Whatever, it’s all horrible.

  12. Yes, Frenzy … you’re correct, there are two types of NF and Merrick had Type 1. And yes, it is a horrible disorder … whichever type one has.

  13. The rest of the story on this neighbor’s child is that he is fourteen, mainstreamed in the public school and experiencing a lot of the same issues as most fourteen year old boys with raging hormones. But this child is incapable of understanding all the things that are happening to him, and he gets angry and lashes out. His classmates, who most have been in class with him since kindergarten, have become increasingly irritated with him continually being disruptive with his behavior. Part of me can understand their viewpoint, but the other part of me thinks is good for kids to have to deal with a child who is not like them.

    I happen to drive a school bus at the school where he attends and see and hear his frustration and theirs on almost a daily basis. Usually in the afternoons, I’m the first bus in line at the middle school/high school, so he often gets on my bus to wait for his bus. He has been doing this for years. Sadly, I’ve had to scold kids on my bus on much more than one occasion about their treatment of him. But I also try to set boundaries for everyone that are realistic.I also pray a lot.

  14. As the grandmother of two precious little girls who have special needs, I applaud your scolding and thank you for your prayers.

  15. It’s the least I can do!

    I’ve also been known to give a lecture or two as well as scold. :D Most of the kids who ride my bus have siblings, and I’ve said to them, “How would you like it if this were your brother or sister being treated as you have treated him?” To their credit, they get it and realize they are being insensitive. I’ve also had some of them plead a case for how he can be irritating, and they have made some valid points about that. During a recent assembly, he was completely out of control and turned what was to be a fun exercise into something the kids would rather forget. This is not the first time he has ruined an event. I don’t think it’s his fault, but I understand the kids’ viewpoints about this. I think the best thing they can do is take it up with their teachers and their parents to hopefully come to some solution. The school does have a para for this boy, but this year the para is not one he clicks with, so it has been very hard this year, and add to that the boy’s difficulties with NF2. Tell you what, it makes any problems I have pale.

  16. It’s wonderful that you & your family are there for this boy & his family, and for the other kids as well. Helping them think & feel more empathetically probably makes a bigger difference than anyone knows. As well as your prayers.


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