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Blog Posted in avatar   Jimmy Reilly's Blog

The Lonely, Suffering Kids

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By Jimmy Reilly
Posted Jun 19, 2012 in Health
Imagine waking up one day, and discovering that there is something terribly wrong. Your child is being attacked, but you have no idea what is invading your life.
Your parental instincts take over. They've always served you well in the past. A case of the sniffles, no problem. An upset tummy, easily remedied. Kiss a boo-boo and it's all better. A little TLC always goes a long way.
But on this day, all the love in the world is doing no good. It's every parent's nightmare. "I can't help my child."
The attacker moves slowly at first. A few stumbles, a couple of falls maybe. You watch your child begin to lose his abilities: the ability to run, to ride a bike. The very essence of childhood is the joy of playtime, and this assailant is sapping that joy in a very slow and steady onslaught. The spirit of a child allows him to be resilient, to bounce back, but this evil is very powerful.
This evil is something called GAN, short for Giant Axonal Neuropathy. It's a horrible disease that takes its toll on a child's body in awful ways. It is an illness that affects the bodies of kids in ways that are very difficult for non-medical professionals to even understand. It's a nightmare that can't easily be identified or defined.
You look for help. The world will always rally behind a child in distress, and your belief is that you can count on that sentiment to find relief for your child. After all, who wouldn't go any distance to help a youngster?
The facts of the situation are these: The disease affects a very small number of children. Right now, there are probably fewer than 50 confirmed cases in the whole world. But should the fact that such a small group of kids is being hurt sentence them to a life of suffering? There is no cure for this disease. There isn't even a viable treatment available for the young people who are battling this illness. They simply lose all control of their bodies, and death usually comes very early in their lifetime.
Imagine looking for help for your suffering child, and finding little or none. Imagine fighting this war with very few people on your side.
Imagine this were your child.
Would you want help? Would you go to any lengths to get that help? Or for that matter, would you meet one of these children and turn your back?
There is no national "foundation" behind this group of suffering families and children. It's what you might consider an "orphan" illness. No telethons, no celebrity crusaders, no mass "awareness" programs. Most people will live their whole lives without ever hearing the name GAN. We should do something about that.
How about we start by watching this video. Then take the next step.

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