What to wish a HAPPY NEW YEAR for all the peoples that gave us hope, inspiration and a lot of help during 2008.
Has been a difficult year and now looking back I think it is a real miracle to have Alesia with us still. We are grateful, we pray and hope for a miracle this year for her and for all the children that have to fight for their every breath.
There is some time since I lost the power in my hand and I can not hold even a pen anymore, can not draw, can not do a lot of things....sad... I know....
Do you think this will stop me......?
Wrong!
Today I have got a new "toy" that helps me to express myself again...A very high tech interface is "watching" my head movements and based on this I can control the computer. It is called SmartNav. My father always says that I am very, very, veeery smart (and too cute) and guess what! I was able to understand what is all about in the first place and I could sketch up some lines and circles using a simple drawing program and minimal help from daddy.
...I am Ana Alesia, and I've showed up in this world in a sunny day of September 2006. I do not understand yet much about this world, and for now I only know that I have people around me that loves me so much. Their happiness should not be shadowed by anything, however there is a big and bad cloud in the sky right now that doesn't let their (and mine) happiness to be complete...The cloud is the Spinal Muscular Atrophy diagnostic that was put on me. This is a death sentence for me, I am locked in a body that is dying...and the doctors said that it will die before I reach the second birthday. I am now fighting to defeat the disease and I need all the help in the world for this. Please think about me, pray for me: I WANT TO LIVE!!!
