For those of you who already know Alesia is pretty clear that her face can express almost anything and you know that she does not really need to talk to get what she wants, of course some of you know that she is very smart and she have a really, really, REALLY strong will. I think this made possible for her to learn how to read and recently learned how to write. This is a huge step ahead and with using this type of communication will help her evolve more rapidly. Using a very sensitive button and a small and simple computer program that scans a list of letters/symbols she can pick the letters from a word/phrase one by one, and she is doing it very well as you can see in the clip below.
She is assisted by her Momy and her teacher Sorina Ilie that worked with her last year and also read to her probably more than 1001 stories :).
Alesia using her little button to write words
Is the last day of preschool and she also received a graduation diploma.
Alesia and teacher Sorina
Alesia happy with her diploma! BRAVOOO!
Bravo Alesia we are really proud of you, our brave girl.
Mom and Dad
M(om) & D(ad) are trained and ready for the race just like pro athelts
Music playlist set-up
T Shirts are ready:
M&D will run their first semi-marathon and they will run to tell the world that my life is just like marathon race and that I am "running" and enjoy each and every meter of it. I belive that this way I can give power to "run" this race of life to people that think they have lost it.
We will run to support the cause of SMA Care Association that was created to help children affected by Spinal Muscular Atrophy
We will also run to support HOSPICE cause because I belive they are making a wonderful job restoring lifes devastaded by a terminal disease:
13500 lifes already restored. Please support HOSPICE to continue this!
Me and my mommy are helping Spring to finish its preparations. How? we are making flowers...as many and as beautiful we can and on first day of March spring will use this flowers to bring happiness and strength and hope. Look what we have done:
Do you like it? Am I a real spring thinker now :) ?
This post is for my Romanian friends that helped me last year directed 2% of their income taxes to "Asociatia Noi Orizonturi Familia" that created a special account for me for this purpose: a big
This money where and are used for my medical needs. We would like to have your support this year as well. If you did not directed your 2% already please give us a little hand by filling in and submitting the (Declaratia 230) form
Acest post este unul de multumire catre prietenii mei din Romania care m-au ajutat anul trecut redirectand 2% din impozitul anual catre "Asociatia Noi Orizonturi Familia" care a creat un cont special pentru acest scop
Acesti bani au fost donati catre mine si folositi pentru a procura consumabilele medicale necesare. Avem nevoie de ajutorul dumeavoastra si anul acesta. Daca nu ati redirectat deja cei 2% va rugam sa ne ajutati completand si depunand Declaratia 230.
"Noi Orizonturi Familia" association has been besides us for a long time now. They have been with us 3 years ago and so we could bring Alesia back home from hospital when we thought we will never be able to buy all the medical equipment required. This year our friends from this association created a special account to collect medical funds for Alesia obtained from 2% of annual income tax (for year 2010). The money collected into this account will be donated to us and will be used for medical necessities and to improve quality of life for Alesia. We thank to all of you that directed their 2% for Alesia already!
"Noi Orizonturi-Familia" is a not-for-profit association in Romania, whose goal is to enhance the quality of life for all members of the community. More about their projects can be found on their website:
...This is my first power wheelchair . It is yellow, it is Koala Permobile, it is just the size I need it to be and it works fine. Now, you may wonder where is the movie with "my first steps"? The movie is about to be made, hopefully soon, IF I will overcome the following challenges:
No. 0 - Breath while driving I am not strong enough to breath by myself. While on the move usually my LTV ventilator does this for me. Recently my LTV just failed me and I hope it can be repaired soon.
No. 1 - Control the chair. I am not strong enough to move the joystick that is currently mounted on the chair. Need to find an alternate solution to control the chair. If you read this and think about a solution please tell me. Yes, I know it would had be wonderful if we could test the chair before and choose the proper control but unfortunately we do not have this option here where we live: at the end of the world. That's why we bought an used chair from Germany. We are now happy that we have it, happy that is working and we will try to adapt it to my needs
No.3 - Power The batteries are old and it does not power the chair more than 15 minutes
SO, stay tuned for the movie with "my first steps"
Until then I am just hanging out with my little brother and I teach him staff :). I am older and I have so many things to share. For instance I show him how I can play the computer using my tash microlight switch. But for now it only seems to learn how to cry...hmmm....
...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!!!