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May is NF Awareness Month
I thought I should let you know before the month is over.
Neurofibromatosis (Type 1 and Type 2) is a congenital disease causing “benign” tumorous growths (neurofibromas of various types) on nerve fibers anywhere throughout the body. I put “benign” in sneer quotes, because NF, as it is called in the community, depending on where the growths occur, can cause blindness and/or deafness, can be devastatingly disfiguring, painful, and even life-threatening. It is the disease of the Elephant Man. You’ve probably seen people with NF without knowing what to call it. Now you do.
NF has the same incidence rate as autism. Fifty percent of the cases are inherited and fifty percent are spontaneous mutation. My daughter’s case is the latter. As an older mother (I turned 41 the year she was born), I was worried about Down’s. There’s a lesson in wasted worry.
I’m not going to post pictures. Just know that, when you take your infant to the pediatrician and he asks if your child has more than six cafe-au-lait spots, this is what he’s checking for. It’s the first sign, followed by freckling in places where there shouldn’t be freckles. Outcomes are highly variable. If bone deformities and other complications don’t occur in early childhood, the hormonal adolescent years tend to be when things start happening. My daughter had brain surgery to “remove” a glioma from her brain stem at age eleven in 2013. She’s sixteen now and dealing with other symptoms.
It’s a struggle not to become bitter at the unfairness of it all. I’m having a bad week. We just decided we’re going to have to withdraw my daughter from her Hillsdale curriculum charter high school. She has the smarts, but she just doesn’t have the stamina, and with NF — shite happens. But, the challenge to my faith comes when I meet the lovely girl at Children’s Hospital who is wheelchair bound after spinal surgery to remove NF growths. Or, when I see the horribly disfigured bag boy at my local grocery store, or the 20-something daughter shuffling her way through the Home Depot parking lot with her parents — covered with abnormal growths on her face and neck. I don’t know what God is thinking. And, I have to remind myself, I don’t know what God is thinking. And I have to hope and pray that it’s true that these people — these of all people — will someday be graced with perfected bodies. Some day. Imagine their delight!
If you have NF, or you know someone who does, please be sure to register with the Children’s Tumor Foundation. The CTF is collecting data for researchers to use in the effort to end NF. Gene therapy seems more possible every year. It would be a miracle.
Published in General
From today’s morning liturgy of the hours:
12 So teach us to number our days
that we may get a heart of wisdom.
13 Return, O Lord! How long?
Have pity on thy servants!
14 Satisfy us in the morning with thy steadfast love,
that we may rejoice and be glad all our days.
15 Make us glad as many days as thou hast afflicted us,
and as many years as we have seen evil.
16 Let thy work be manifest to thy servants,
and thy glorious power to their children.
17 Let the favor of the Lord our God be upon us,
and establish thou the work of our hands upon us,
yea, the work of our hands establish thou it.
Is Stefanie on the NF registry? Would you ask her? This is a service to her fellow NF sufferers. It takes about 30 minutes, as I recall, to answer a series of questions. All information is privacy protected. They may ask for genetic testing reports as well, if she has them.
Researchers are trying to identify patterns, so even the mildest cases help build the database. It’s important.
Next time you see her, tell her there’s a family in Colorado praying for her — she (and K) are at the very heart of the Church.
Amen. Thanks Mama T.
And from another Jewish author: If nothing’s horrific, life is terrific — Dennis Prager.
;-)