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:
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.
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 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.
...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!!!