| Welcome |
Our 16 year old son was diagnosed with Batten Disease in December 2005. This is a neurological degenerative disease that leads to an all too early death of its suffers. The children with this disease will only survive into their late teens or early twenties. We are trying to educate the public to this cruel disease, and hope for added help and support to try to find a cure before it's too late. There is only 715 cases in the United States, that is how RARE this disease is. |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
It's amazing how fast things can happen. Thursday morning
(4/19/12) started just like any other day. Now we are know we are
living everyday in a state of suspension. I was amazed how easily the
Neurologist crushed my life. In one breath he told us that Nicholas
only has 2 to 3 weeks to live. This horrible disease has hit his brain
stem. Now we sit and hope that the experts are wrong!
(4/19/12) started just like any other day. Now we are know we are
living everyday in a state of suspension. I was amazed how easily the
Neurologist crushed my life. In one breath he told us that Nicholas
only has 2 to 3 weeks to live. This horrible disease has hit his brain
stem. Now we sit and hope that the experts are wrong!
Lunch at IHOP with our local Soprano
(Steve Schirripa). Nicholas was so
happy.
(Steve Schirripa). Nicholas was so
happy.