Sunday, August 11, 2013

August is SMA awareness month

We and our SMA friends from all over the world lit candles today (10 Aug) and sent a message to SMA: that its time is close to end because a cure will be found soon!

 End SMA!



Tuesday, June 18, 2013

Preschool Graduation and A Big Step Ahead

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

Monday, May 20, 2013

Our first semimarathon - We did it!

Yes, We did it! Mom and Dad run their first semimarathon in 2Hours and 28 minutes:

Be prepared for 5 Oct semi marathon when I will run with them


Saturday, May 18, 2013

We run for life

Tommorrow May 19th : Bucharest International Semimarathon

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!


Saturday, February 23, 2013

Making flowers for Spring to use

Me and my mommy are helping Spring to finish its preparations. How? we are making 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 :) ?

With Love,

Saturday, February 16, 2013

I have a new friend! His name: Toulouse

Just wanted to introduce you my new  friend  Toulouse. He is cute, he likes to hang out with me all day long and I like him very  much!

Thank you Gabriel for this wonderful gift!

And, Yes, I keep fighting and never give up :)

With love,