Friday, June 29, 2012

Just to make you smile!

This is Aaron singing the ABC song! He is always full of smiles and you can't help but be happy when he is around.

video

Thursday, June 21, 2012

Help change lives! Please watch the video at the end.

The Lonely, Suffering Kids


Jimmy
By Jimmy Reilly
Posted Jun 19, 2012 in Health
Comm

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.

**Please help the GAN Warriors team meet their goal of 150,000.00 and send your change money to P.O Box 1864 Hamilton,Mt. 59840-1864. We will then send it on to Hannah's Hope Fund.** ( We want to track the money made for GAN Warriors so we know where we are in reaching our goal) THANK YOU!


Read more: http://www.digitaljournal.com/blog/17055#ixzz1yUCQTugb

Tuesday, June 5, 2012

A Mother's Love.


As a Mother, one could not imagine getting a diagnosis that not one, not two, but THREE of your children are going to slowly loose their bodies ability to function and eventually lead to death (GAN victims usually don't live past 20 years old).
Levi, Alan and Aaron have most likely already lived the best years (health wise) of their lives.
This would be any Mother's worst nightmare. Look at your  healthy children and imagine for a moment that you are in this Mother's shoes. What would you do? How would you feel?
I don't think that even imagining it comes close to experiencing this pain in real life.
The little things we take for granted like seeing our kids run, ride bikes, play football and baseball, are all things this Mom continues to hope for, for her boy's.
Now, look at this picture above. While the face's of these sweet boy's are very kissable, look at the smile on their Mother's face. That smile is there while she cleans up their throw up and rubs their aching legs. It's there when she calms their fears and dries their tears of frustration. I have never seen her without it, even with all she is going through.
She is an amazing example of  a Mother's love.
She has hope for a cure and because you care, you are her hope!
Thank you for spreading the awareness of GAN and for your love and donations. Every dollar gets us one step closer to a cure.