Alesia - my fight for life

My Wheels, My Student and My Games

2010-02-28T12:35:00.000-08:00

...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....

Alesia teaching her brother about reflection

Have a happy spring all of you!
AAA

Vote for #SMA between 15Jan and 22Jan

2010-01-15T03:18:00.000-08:00

PLEASE vote for Spinal Muscular Atrophy (SMA) in the Facebook Chase $1,000,000 giveaway to help find a cure for Alesia's disease, the #1 genetic killer of kids under two.

--- http://VoteForSMA.com ---

NIH says SMA is "the disease closest to a cure"!

VOTING - simple instructions on how to VOTE!

Go to VoteForSMA.com -- This will take you to the Gwendolyn Strong Foundation Chase campaign site on Facebook. This is where you vote. Click on the "Vote For Charity" button to vote.
You must have a Facebook account to vote. If you don't have a Facebook account you can easily sign up for one by going to VoteForSMA.com and following the simple Facebook signup instructions.
You may only vote for Gwendolyn Strong Foundation once, but GO NUTS! telling anyone and everyone you know to go to VoteForSMA.com to vote for the Gwendolyn Strong Foundation.

------ Romanian Version : (Versiunea in limba romana):

VA RUGAM sa votati pentru Spinal Muscular Atrophy (SMA) in campania "Facebook Chase $1,000,000 giveaway" pentru a ajuta la gasirea unui tratament pentru boala lui Alesia: boala genetica cu cele mai multe victime in randul copiilor cu varsta mai mica de 2 ani

--- http://VoteForSMA.com ---

SMA (amiotrofia spinala) este "potential boala cea mai apropiata de gasirea unui tratament"!

VOTAREA - instructiuni simple pentru votare!

Mergi la VoteForSMA.com -- Vei ajuge pe siteul campaniei Gwendolyn Strong Foundation Chase Facebook. Aici te rog sa votezi. Click pe butonul "Vote For Charity" pentru a vota.
Trebuie sa ai un cont pe Facebook account pentru a vota. Daca nu ai deja un cont Facebook aplica usor pentru unui mergand la VoteForSMA.com si urmand instructiunile simple pentru crearea contului pentru Facebook
Poti sa votezi pentru Gwendolyn Strong Foundation o singura data, sau te poti DEZLANTUI! spunand la toti pe care ii cunosti (sau nu)sa voteze pe VoteForSMA.com pentru Gwendolyn Strong Foundation.

Multumim din suflet pentru ajutor!

------(End Romanian Version)

Other tips to spread the word!

EMAIL - copy and paste the text below into an email and send it to everyone you know (You can write your own more personal letter -- we just wanted to help make it easy)

Dear Friends:

This is a personal plea! A cause that is very important to me has a real opportunity to win $1M to help CURE Spinal Muscular Atrophy (SMA), the #1 genetic killer of young children. I'm asking you to do two FREE things that will take you less than a minute and will help turn this $1M MIRACLE into a reality:

(1) VOTE ---> Go to http://VoteForSMA.com and take 20 seconds to vote for the Gwendolyn Strong Foundation in the Chase Community Giving campaign on Facebook.

(2) FORWARD THIS EMAIL ---> Forward this email to at least 20 personal contacts and ask that they do the same.

Thank you so much for your support. We can't do it alone but together we will help CURE SMA forever!

FACEBOOK STATUS UPDATES - simple instructions on how to spread the word on Facebook

Do this every day during the final round of voting from Jan. 15-22.
Go to VoteForSMA.com -- this will take you to the Gwendolyn Strong Foundation Chase campaign site on Facebook.
In the box titled "Help This Charity By Spreading The Word" on the left hand side of the Gwendolyn Strong Foundation Chase campaign page, CLICK the "Add To Profile" button.
A new box will pop open.
Add a personal comment if you wish in the white rectangular box.
CLICK "Publish".

INVITE YOUR FACEBOOK FRIENDS - simple instructions to make a personal plea to invite your Facebook "friends" to vote for the Gwendolyn Strong Foundation

Go to VoteForSMA.com -- this will take you to the Gwendolyn Strong Foundation Chase campaign site on Facebook.
In the box titled "Help This Charity By Spreading The Word" on the left hand side of the Gwendolyn Strong Foundation Chase campaign page, CLICK the "Invite A Friend" button.
A new box will pop open.
Check the boxes next to the "friends" you want to invite.
CLICK "Send Charity Voting Invitation".

TWITTER - if you have a Twitter account, simple instructions are below to tweet messages to your Twitter followers (you may be asked to login to Twitter after clicking one of the HERE links below)

Click HERE to tweet the following ---> I voted for @GSFoundation to make a $1M MIRACLE a reality and cure a disease. http://VoteForSMA.com
Click HERE to tweet the following ---> My child is dying of SMA and 20 seconds of your time WILL help CURE it. http://VoteForSMA.com
Click HERE to tweet the following ---> YOU can help CURE the leading genetic KILLER of young CHILDREN, SMA. Be part of a MIRACLE. http://VoteForSMA.com
Click HERE to tweet the following ---> What would you do with $1M? I'm helping CURE a disease. Forever. Be part of the MIRACLE. http://VoteForSMA.com

Decorating the Christmas Tree from Santa

2009-12-25T11:46:00.000-08:00

I was very very busy because Santa brought me a Christmas tree and I had to decorate it:

Make some planning!

Had to choose the color of the decorations!

Had to carefully place the decorations

To obtain the final product:

All the pictures can be found here!

Merry Christmas /Craciun Fericit!
Alesia and her family

One of those days...

2009-12-17T09:08:00.000-08:00

Instead of preparing for Christmas we had one of those days when all the troubles that can happen are happening. It started in the morning with the first snow from this year, when instead of just enjoying the view with everything white and frozen (the ones that leave in Bucharest know what I mean by "frozen": it is a word that accurate describe car traffic) outside ....

1. The g-tube - a medical equipment inserted in my tummy, that is my only way to eat or drink, decided to pop out. Let me tell you that if this is happening and nobody is noticing quick to insert a new one in place in less than 30 minutes everything will end up with a trip to the hospital, a new surgery and all of this "good staff" that we are trying to stay away and anyway today the traffic is frozen here (no joke or even funny). Lucky us that we had a spare g-tube and we had the courage to insert it. It did not entered easily, but in the end entered and we could inflate the ballon that holds the g-tube inside.....which by the way did not looked symmetrical at all when we tested it prior to insert the tube so we might expect a short life for this g-tube as well. I hope we can buy a new one in the meantime.

then when everything seemed to be back to normal....

2. The fever strikes us. What could it be? It is because the g-tube incident? It is an infection? it is cold or a flu? all of this question contains words that scare us so much....

We are waiting for: some medical analysis results to know what we are dealing ... some white nights not only because of the snow outside....

That day was on Tuesday. Today seems to be so different. The fever is gone and the new g-tube is still in place.

We need your prays and as usual lots of miracles...

AAA

Medical supplies donated to Alesia by BBraun Romania

2009-12-14T08:23:00.000-08:00

The BBraun Romania company did a very generous donation for Alesia in medical supplies for 1 year:

Sterile water - for respiratory humidifier and for suctioning
Hands and surface disinfectant - to keep the viruses and germs away
Syringes used for feeding and medicine
Stoma care products
Sterile and examination gloves

This is very big help for us, are part of the critical products required for daily medical care for Alesia that are not covered by medical insurance (like it is would cover something! ;) ).

Thank you BBraun Romania!

AAA

Meeting my brother for the first time

2009-11-18T04:20:00.000-08:00

Meeting my brother for the first time

He is kind'a cute ....but I am still the cutest in the world, right?

Love y'all

AAA

Pictures with my little brother

2009-11-10T22:39:00.000-08:00

Here are THE pictures with my little borther as promised:

First impressions

The miracle for today: I Have a Brother...SMA free

2009-11-09T02:29:00.000-08:00

Yes, yes my mommy gave birth to my little brother today (9th of November 2009). God listen to our prayers and quickly give us all a blessing every day. Today He gave us an endless joy, hope and power to continue the fight waiting for the next miracle from Him.

The miracle today is that my little brother is healthy is SMA free is handsome, the pregnacy and the birth went smooth, my mommy is fine (and happy) and the miracle happen today when saint Nectarios of Aegina is celebrated. We where asking to saint Nectarios to help us with his prays to God for us and because of that His help came to us so quickly and so wonderful.

This is such a powerfull sign for us from God that He loves us all and we have friends in heaven and we have friends here on earth that love us. God is good and the obstacles that are prepared for us are with a purpose, they exist BECAUSE He love us, and we have the faith that He will never leave us.

Love y'all
Alesia, Mommy Daddy and MIHAI NECTARIE (6.4 pounds of love and pictures to follow up soon (the hospital is in quarantine))

Homework for today: some math and some english

2009-11-04T08:32:00.000-08:00

Since the weather outside is so bad this days we are just staying inside the house and learn counting. I learn counting, mommy learn english and daddy learn now to use the printer :)

Alesia counting to 4 (english only :))

Of course there will be critics saying that the pronunciation is not perfect :). Well, this may be because I am only 3 years old and I have a trach tube in my throat.

I hope we will do another snapshot movie when we reach 99999999999999999 with counting. How do you say this in english anyway?

Love y'all
AAA (and M pending)

Today: 3x Mommy. Happy birthday!

2009-10-18T11:18:00.000-07:00

Happy birthday Mommy!

We love you, We want you to stay strong, we want you to be happy!

Alesia and Daddy and ... (stay tune for the third name in the list ;) )

All pictures from the party today at:

3x Mommy Party

Workout for a 6 Pack Abs

2009-09-27T10:26:00.000-07:00

... While waiting for the miracle to happen and a cure to be found I'm just trying to stay in good shape:

Bravoooooooo!

AAA

Yes: 3 Years Old. Who Would Have Ever Believed?

2009-09-14T14:52:00.000-07:00

13 September is the day of my birth. This year I was able to overcome unbelievable huge obstacles, I survived and most of all I am an unbelievable happy child. I thank and pray God to keep me in His Hands, close to Him and never leave me. I understand that He must have a plan with me and the obstacles that are in front of me or the one that I could overcome with His help are for a better me and a better world.

I thank you all my friends that stand beside me! 3 Years Old - Who Would Have Ever Believed? Some people believed, you believed, and you will help me continue my fight for life and I also know you are all waiting for pictures from my 3th birthday PARTY:

Love y'all
AAA

New stander

2009-09-12T13:36:00.000-07:00

Remember us complaining about not having a supine stander? We have got one from my guardian angel - my prince that is looking at me and sends me help when I needed. Yes it is an angel for me because I never saw him and still he seem to know when I need something and get me out of my needs THANK YOU!

I made a movie with the first day of using it. You can tell that I enjoy it!

We will start to rise the angle progressively and hope that some day will be able to sit up a couple of minutes (even tight up ). Otherwise how am I gonna go to school?

Love y'all

AAA

Returning home from holiday

2009-08-04T12:08:00.000-07:00

I am back home from my "short" visit (2 weeks) to my grandparents. It was nice and most of all it was a real victory for me because I was not really hoped that I will be able to go outside my room and the possibility to go somewhere outside the city seemed not long ago impossible for me. Indeed it was not easy, preparing this trip was pretty much like preparing a trip to the moon, taking all the equipment, backup for equipment, my special special food ... and the list can go on and on filling 2 cars :).

I enjoyed every moment:

Spent time with my little cousin Tudor:

being happy with mommy (and her tummy! ):

and daddy being happy with us:

and .... hiking trials

all the pics here:

....I am now waiting for the next trip. You wanna join me :)?

Love y'all,
AAA

Summer holiday = Grand parents visit

2009-07-30T08:22:00.000-07:00

Probably some of my friends are wondering where am I. Well, I am in holiday, and I am visiting my grandparents. They live outside the city 100 miles from my home. What an adventure to go so far away! But we made it :)
What am I doing? I am doing my walk every day in my grand ma garden, counting the roses that are blossoming each day for me, enjoying the sun and having a good time:

Love y'all
AAA

They deserve a life!

2009-07-09T04:46:00.000-07:00

I am Alesia, I think you know me already: I am fighting for my life, for my each and every breath, remember? and I am 23:50/7 ventilator dependent. Returning home from the hospital once becoming ventilator dependent for people like myself (younger or older) is considered an utopia in my beautiful country: Romania. The main reasons for this may be the poverty, a not ideally organized medical system (if you allow me this expression) that is always blaming the poverty and probably the subject awareness.

The parents or the caregivers once they learn that their child, wife, husband will not be able to breath by them self this practically means in 90% of the cases that they are convicted to live all the remaining life in an hospital ICU, which in my opinion is not the ideal place to spend your childhood.

My parents faced the same concerns 1 year ago when I was in the ICU:

There is not any infrastructure to allow home care for ventilator dependent patients
It is not possible emergency transportation because most of ambulances are not equipped with respiratory ventilators
There is nobody that could (formally) train the caregivers
There is NO help from medical insurance companies to obtain required medical equipment
There is no home-care/nursing service for this type of patients (ventilator dependent)

In this condition there are very few people in this situation could return home.

I want to change this! There are so many children that are waisting their childhood in the hospital. They have done nothing wrong and they are fighting (the same as myself) for their each and every breath.

They deserve a LIFE!

My daddy had the oportunity to present my story as one of the only 2 families in Bucharest that could have a life outside Hospital ICU for a child with my condition. The presentation was made in front of some very well known medical doctors and representative from national medical insurance company.

Conclusions:

Everybody was impresed by our story
We have to continue to rise awarrenes about this subject
We will have to create a well documented project to present as many cases as possible
We will have to include in this project the economical advantages for this type of approach - Home care
I hope I will have support from all medical doctors to obtain this information
I hope I am not to small to succed

Here is the prsentation made:

or a link to the Romanian version

Love y'all

AAA

Nice walk, not to far from home

2009-07-06T11:44:00.000-07:00

I just can wait each and every weekend because I know that mommy and daddy are taking me out in the sun....not to far from home because we are still afraid that something may go wrong with all the equipment, and moreover I like the trees and the flowers and the people from UPB campus where my mommy is working.

Happy 4th US friends!

AAA

My first rainbow....

2009-06-28T14:51:00.000-07:00

You can not see this things inside the house! I saw the sun setting, I saw a beautiful rainbow, I heard some thunders, I liked running with really high speed in my stroller and then...Ops...the rain started, but I was already in the car! hi hi hi...let it rain now!

My First Rainbow

My new tube, it is green and I fit in....

2009-06-28T06:37:00.000-07:00

We have finally found a tube that I fit in and is light enough to bring it in my room. This way I do not have to move with ventilator and all the equipment inside the house just to do a bath. I can watch cartoons while "swimming".

It seems that the water release my hands...and my legs....check it out:

My new tube, it is green and I fit in.

I was thinking today that I should be ready for school

2009-06-24T13:28:00.000-07:00

I was thinking today.....Hmmm, usually my mommy is reading me stories, and she can read on and on and on as long as I want to.....and I like to listen, it couldn't be that hard to read them, right? Probably I should try someday? Yes, right, I should......and she also helps me drawing because my hand does not always listen to me...What if my hand would be a lot more easier?...

Some of the activities today ... I should be ready for school!

Position, position, position, compensate, limits, limited, limitations

2009-06-23T08:09:00.000-07:00

Today, again about positioning....This is important because my muscles are soooo weak and I am forced to stay flat most of the time. This seems (and it is) painful, frustrating and there are a lot of complications coming from this limitation, just to mention some of them: joint contractures, intestinal transit issues, bone density issues, wrong perspective on the world when I am supposed to learn and experience so much about it...and the list can go on and on.

My parents are trying (limited by their knowledge (which is limited :) and not only) to compensate some of these complications. As I do not have a stander, and given the price for a stander I most likely never have one, my Jazz Easys stroller seems to be good for this purpose - with some limitations though:

The maximum elevation angle is 45 degree
Would be good to have proper trunk, hips support
Would be good to have a proper mechanism to keep the knees straight (or almost) and the feet in the right position

But, with all these limitations, I seem to like very much my new position, new perspective and my improvised positioning device and I could stand at 40-45 degrees without problems for more than 30 minutes. Tomorrow again, maybe a little longer and I hope this will improve my life.

Alesia - a new perspective

Alesia - a new perspective - the movie
You will probably notice that I know how to say my name (Ana). There is no trach that can stop me from talking!

Love y'all
AAAna

Yet another sunny day outside with mommy and daddy

2009-06-21T12:08:00.000-07:00

Do you like my improvised tent?

What about my "love tent"?

That's my girl!

Can somebody please stop me from eating her?

Nice weather, nice walk and new pics

2009-06-20T16:42:00.000-07:00

View all

Get your own

New pictures from Alesia

Fun equation today

2009-06-17T12:02:00.000-07:00

Fun equation today:

Alesia + swing/mom & dad = fun 4 today

Check out movie below (Note. that I am off the ventilator while in the "swing"):

Swing day!

Good night Sun, please come back tomorrow!

2009-06-12T12:42:00.000-07:00

My parents rediscovered my baby car seat that was not really used for its original purpose. It is now very good to keep me in sitting position for couple minutes per day. Only couple of minutes and no longer because I am getting tired pretty quick. We used the "couple minutes" today to watch the sun go down to sleep, to tell him "good night" and we asked him very nice to come back tomorrow because we will want to go outside for a new trip.

Good night Sun! Please come back tomorrow!