Thursday, July 9, 2009

They deserve a life!

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

4 comments:

Maria B. said...

Hello Ana! I've never visited your website before. I'm glad I decided to, today, while I was checking out Sky's website. You are too delightful! I just finished watching the videos of you "standing" in your stroller. I plan to visit your site regularly. Take care!

Yulia said...

Magda, Daniel - you, guys, are great. Alesia is teaching you this - how to be wonderful parents. :-)
Love you all.
Yulia.
From California.

Devon said...

Wonderful job. You guys are amazing--raising awareness! I really admire you guys for that!

You keep smiling, little angel girl!!

irina said...

Alesia esti o fetita ff frumoasa cu niste parinti extraordinari.