My name is Maria de Lourdes and I am from Brazil.
My sister, Sebastiana Acacio Bezerra, was diagnosted with Amyotropic Lateral Sclerosis in August 2015.
This is a terrible and merciless desease. It has been progressing very fast hence I had to stop with my ordinary life to take care of her.
I used to be a Portuguese-English teacher. However, since my sister felt ill, I am not working anymore.
The medication that Ana must take everyday is very expensive and difficult to get. Riluzol by EMS and Metilcobalamina 50.000mcg. In addition, Ana can´t eat anymore. She has a pipe that goes straight to her stomach. In Brazil, the only food that can keep her alive is Isosource by Nestle Laboratory which is very expensive as well and she needs 1,5 litres a day.
To make things worse, I can´t sleep properly for Ana chocks on her own saliva most of the time while she is still asleep. I have also requested a night career for Ana that could assiste her better during these episodes that are becoming more and more often. And once again it was denied.
The whole situation is taking the toll on me. It is not an easy or simple taste for me to be here asking for help. I asked for the Brazilian Health Dept to assist my sister, for we have always paid our taxes. I have actually sued this Dept. However, I have met a lot of families whose family members´have died waiting for assistance. I can send via email any further info if there is someone interested on helping us regarding the legal issues.
I am very sad and depressed with this situation. I know it is a lost fight, but I want to make sure my sister will have a comfortable life until the last day.
I was paying for phisiotherapy and a phonologist to come once a week. It was helping her to get on with her life. Nowadays, even the most ordinary task has become a chalenge for her and I can´t barely undestand what she says.
Unfortunately, I can´t afford them anymore and I really feel like I am failing my sister.
I dind´t know what else to do until a good friend of mine gave me this website. it is my last hope to make sure Ana will have a dignified life.
I kindly ask anyone who can help, please do it. Also get in contact in case anyone has more info about this illness. It is very hard on me to accept that doesn´t matter what I do, Ana won´t be with me for very long.