Saturday, August 25, 2007

Vladimir is not seeing colors....he is seeing me well soon

There is this man called Vladimir that is waking me up almost every morning! He can not we do. He is not seeing colors, he is not seeing even black and white but very often he see things better than us.

He comes almost every morning, he is waking me up and help my muscles and bones to stay in good condition. He is a physical therapist and because I can not move (yet) as much as other children do, doing massage every day it is a must for my muscle blood circulation, articulations, tendons and my tiny little bones, my spine and most important for thoracic cage.

There are 4 months since Vladimir is coming to me and it is a great help for me and do not know what I would do without him!

Vladimir and Alesia talking about massage therapy

Thursday, May 24, 2007

Back at home...but not for long

I finally arrived back home in Bucharest after my beautiful trip and after I meet a lot of people there that helped me and that will support me from now on also. The trip back went even smoother than the one to US and I did not even had problem with my nose after the flight back home.

I did not had the chance to unpack all my staff because I had to leave home again to go into another place to do water therapy. The name of the place is "Baile 1 Mai" and it is quite far from Bucharest but it is famous for its natural thermal water and for its medical clinic that is specialized in working with children that are having problems similar with me. I will stay here almost a month.

My mother is saying that we are in a summer camp here :). I like here, there are a lot of kids here but I can not talk with them yet because they do not understand me. I'm too small? Well I hope I will make friends here too. Actually I already have friends here: are the doctors that are taken care of me and although I'm a little tired after each session, I feel like I will learn how to swim :)

May God put infinite joy in your hearts (so that you can pray for me :) )!


Thursday, May 10, 2007

Visit to Doctor Susan Iannaccone at Children's Hospital Dallas.

Doctor Susan Iannaccone is one of the best SMA experts in the world. She is doing a lot of researches and she is conducting a lot of clinical trials in the search of a treatment for SMA. I meet her today and she talked with me and my parents at Children's Hospital in Dallas. I think it was a good visit and I hope that if now she knows about me she will remember me when she will find a cure for SMA and she will provide the medicine for me as well.

Thank you Muscular Dystrophy Association for paying for my consultation at Children's Hospital in Dallas!


The KI method gives me hope

I am now in Carrollton to meet the doctor that helped a lot of people to recover from conditions that seemed without escape. The doctor's name is Glenn King. He discovered is developing and most important is sharing with all the world a healing method that promise to be very powerful: The TKM method.
And you know what is also important? Dr King and his wife Hilary are loving me and they have promised to me that I will soon walk and sing because God is having big plans with me and I believe them, it has to be this way! It worked very well for my friend Irene and it will also work for me and then for all the children in the world that are diagnosed and fighting with SMA. You will see ;)!

Dr. King and Hilary have worked on me and also taught my parents how to use the method so that it will be useful for me. And we have first results after only a few sessions: my legs are stronger than before, my right arm is stronger and I can slowly rise it to reach for objects above me. It will take a lot and constant work applying this method but this seems very small price to pay for what it promises to offer.

Love y'all


Wednesday, May 9, 2007

Someone in Texas loves me :)

Yes, "Someone in Texas loves me", I know because she told me this and I know because I felt this. She is Carmelita, this lady from Texas that I felt like putting all her human been when she was trying to heal me using Quantum Touch , and I believe that she can help me because she is a fighter too, just like me, and she is a winner, and she loves me.

What is Quantum Touch? How this can help me? This is what I think now: God put inside ourself infinite power, " the LORD God formed the man from the dust of the ground and breathed into his nostrils the breath of life", this "breath of life" that God put inside us is keeping our body bodies (dust) alive here on earth. Quantum Touch seems to rediscover the way that we can actually give this "breath of life" that God gave us, to someone else, someone dear, that we want to keep with us as much us possible, as close as possible, because it seems that every moment here on earth it's so precious.

I enjoyed every moment spent with Carmelita, she have taught my parents how to use Quantum Touch so that they can help me to recover. I hope they will be able to use this method. I know that there are so many people that loves me, at home, near me, in Texas ... everywhere. I hope that they will send me from the "breath of life" that God gave us so that I can stay longer with them here on earth.

Love y'all!


Sunday, April 29, 2007

Meeting Irene & stopping SMA

....Well, here I am in Texas to meet Irene, the girl or the angel, that gives me and my parents hope and strength to fight with SMA. I'm also here to ask all the peoples that helped her to be victorious over her SMA to also help me in the same way so that I will also be able to walk (soon).

I have been traveling 15 hours with 2 airplanes and I was such a good child all this time, more over I was "The Star" of the airplane, everybody was stopping over my seat and was talking with me, smiled at me, and guess what, I was also talking back and smile even with Texan accent... nobody had any clue that I wasn't actually travel for a holiday, I was traveling to search for a cure ... I told them all about me and I asked them to pray for me.

Now the day that I was waiting finally came! My dear Dr. Croley will use his Total Repro Bioresonance to reprogram my body so that the missing gene and enzymes will be compensated and so the evolution of the disease will be stopped. It sounds very "science fiction", however after the first treatment it seems that I started to slowly move my legs, I am coughing stronger , and I am holding small objects in my hand for a longer period of time than before. So definitely something positive happened for me. I'm now praying for this progresses to continue.

So many beautiful things happened on this day! One of the most beautiful one was that Irene and her parents came to see us (300 miles away) at doctor clinic. It was a vibrant moment! I was seeing the beautiful Irene, full of life and energy, standing in her own feet , drawing, talking, laughing and this gives me power to fight because I know now that someone already beat the SMA monster. Now I only have to use the same weapons and strategy and I can be victorious too. And I pray to be victorious too, because in this case it will not be only about me and Irene it will be a living proof for all the desperate parents that are searching for a way to heal their precious babies diagnosed with SMA.

Maybe I am now over optimistic and maybe a little bit dreamy but I need this positive attitude from me and from everybody that loves me and want me to keep the smile on my face.

Love y'all ;)


Saturday, April 14, 2007

My story

...My story starts on 13 September 2006 in Bucharest, the place where I first time saw the beautiful and kind face of my mami, the light of the sun, the joy of my father (because he wanted me so much) and of all the people that where waiting for my arrival.

Until my third month everything was going just perfect. Nobody had even the smallest clue that something was wrong until first sign put my parents in alarm mode:

My legs could not completely extend (Arthrogryposis?).

We went to doctors and after some preliminary investigations (neurologist, orthopedic, medical imaging) where done the suspected diagnostic was: Artogryposis. Actually more joints seemed to be some how gripped but the most sever problem was with my legs.
We started physical therapy (massage, water therapy) and in a couple of weeks I completely recover my mobility in all my joints. However the doctor neurologist that was seeing me had concerns regarding my muscular tonus and some other aspects seen as alarms in a clinical examination. Maybe it is because my articulations where gripped and the muscles where not used or it is a neuromuscular problem? He sent us to do some tests to verify if there is a muscular problem:

It is Muscular or Neuromuscular problem?

The neurologist doctor that was seeing me sent me for a set of tests to identify the cause of this problem:

  • First tests where for LDH (lactate dehydrogenase) and CPK (creatine phosphokinase). The values from the results where a little bit over the normal values, however not alarming. It was anyway an indication that we had to search in another place. The probability for a muscular dystrophy is now smaller.
  • The next one was an EMG (electromyogram) test. The EMG helps to distinguish between muscle conditions in which the problem begins in the muscle and muscle weakness due to nerve disorders. The test result was the path was neurological possible.
  • A biopsy probe deltoid muscle was taken from me, and I waited for 2 weeks for the results to be available. And the result was not good....not good at all. The diagnostic written there it was Spinal Muscular Atrophy - Werdning Hoffman.
  • I could not believe that the diagnostic is for me so I made another test. The genetic test for the Exon 7 and 8 of the SMN 1 gene. The result came after another 2 weeks and was not doing anything else but to confirm the diagnostic above: It is a "homozygous deletion of the exons 7 & 8 of SMN 1 (LOCUS 5q 12.2-q13)." i.e. Spinal Muscular Atrophy type 5q with early onset.
Is there a cure available?
All the doctors we are speaking with give me no more than 24 months to live, because there is NO cure for Spinal Muscular Atrophy. The only things that can be done for me is physical therapy to keep my physical condition as long as possible (2 years).

I created this web log with the hopes that:
  1. Somebody that already knows how to cure this disease will read this and will let me know what needs to be done.
  2. To serve as help for other people that are fighting with the same disease
Although I have people that loves me and that are looking (night and day) for a way to heal me, I know that even if they will not succeed, because they are so small, God is looking at me and He will make possible for me to live a beautiful and rich life even this will be short here on earth...