Hope for a future.

Hello everybody,
This week is almost over and toward the end of the week Sammy gets tired. So much to learn ,so much to see .Today Sammy had a first community trip to the park.After school he was going to Rehab and first time in several month fell to sleep in afternoon.
Mom had a interesting finding .Talking to United Leukodystrophy Foundation we find out that in only 41 cases of ALD was registered in 25 years in the State of Illinois!!! . At this moment we might be one of few families with ALD child in Illinois -known or registered. You know how I mention before published odds don't work in our case? Well if you think of the statistics of ALD its 1-17.000 . How come at present time we have just us and may be few more unknown families out there in the state of Illinois?!Population in our State was about 13.000.000 in 2006. So where are the odds now? It means that for our family is much more difficult to fight for Sammy's much needed Special Needs equipment,information,share coming challenges with other parents, meet in the support group ?!How about getting another approval for complicated necessary test ? Thank G-D for Internet. Connecting to right people,information,resources -is a must.
Recently I received another e-mail of a desperate mother from Spain. She found my e-mail and it was -'Life saver' for her to hear our story, communicate and connect to us as a parents.
In reality, where do you go? If you find your self in rare disorder square?!
This task is not easy with any ill child -we love our kids and will do anything to help them.
But today I realized that we are in much smaller shell than I ever imagine.That I can't afford to fall apart any time soon!
When we try to connect to Specialist in ALD -there is only handful of Doctors in the world and we had either contacted them by e-mail and Sammy's MRI was reviewed that way or we have met them in person. We are working with close friends of the family and in the middle of making presentation about Sammy- to one of the charitable organization.If we are picked -we will be able to get funds toward United Leukodystrophy Foundation -organization that connects together Doctors and Scientist for the future cure for ALD . Have you ever had a dream? Did it ever come true?
XOXO Sammy and Mom