Please watch this video.
...Steven started in a new direction with his career, that has created a entire new family for us. Our GAN family!
has funded Steven's research for GAN. However, it has meant so much more to us, it is personal! That is why the Gray Family will be out and about asking for your change! The families of GAN are collecting change the entire month of July to raise money for towards funding a clinical trial. These families mean so much to us, and we hope that you will be willing to help us, help them.
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.
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