My grandson Sean Clark Ketron is a really neat kid. That may not be his way of describing himself, but Grampa has his prerogatives -- that means I can tell the world how much I love my grandson any way I like, and I'll probably get away with it unless he bugs me enough or his mother objects.
His mom Lesa is terrific. She has endured a lot, and now she's having to raise a child alone. But we love her and know she's up to the task.
Sean has NF-1. For those of you who are not aware, neurofibromatosis strikes one in 4,000 children and can have serious effects on their develpment and capabilities.
But Sean is amazing. He had serious back surgery to straighten his spine last summer (from a 45% deformity the docs were able to reduce that to only 5% and remove most of the fibrous tumors growing along his spine)....... he came out of 8 hours of surgery with a slit up his entire back and an even bigger cut where they removed a rib to use for new bone matter in his backbone.
After just 24 hours he was out of intensive care, and within an hour was asking Mom if he could go down to the playroom and play video games.
So much for keeping an eleven-year-old down! Just three weeks later he was back in school.
But we all should know more about neurofibromotosis -- or NF as it is more commonly known. Most children could care less about the hundreds of small tumors and brown spots on the skin or just below it, but some of the disability deand developmental delays caused by the misfiring neurons can make life tough.
But none of this has kept Sean from being an unforgiving video game aficionado and an active Cub Scout with so many awards and belt loops for participation that he can't even count them all! He crosses over to Scouting the second weekend of March, 2006 and will begin a whole new world of adventure.
And there are very promising signs of progress on the NF front..... Dr. Alcino Silva at UCLA has produced some really exciting research, and other researchers at Johns Hopkins and elsewhere are working hard to overcome NF. Check out some of the web sites linked below to learn more about NF and how it is being examined and treated.
Oh, by the way, <A HREF="http://www.computerdummy.com/lesashomepage/">GO HERE</A> to see Mom's page.
Stay tuned!
And keep smiling!
