Dad´s fight against ALS
Donation protected
Dear friends, in this difficult situation we would like to ask you for help to fund our dad´s treatment who suffers from ALS.
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig´s disease, is a progressive, neurodegenerative brain disease that results in degeneration and loss of cerebral and spinal motoneurons, the cells of central nervous system that control voluntary muscular movements. This leads to a gradual muscle weakness and atrophy. At the beginning, this disease weakens only the muscles, later it affects fine motor skills, forearms and whole hands. Patients stop walking, control face muscles and are completely paralyzed. At an advanced stage, patients receive special nutritional diet and use lung ventilation. They also need 24-hour care.
It all started 4 years ago when we noticed an unusual muscle loss in our dad´s left arm and he started to have problems with articulation. This was followed by a medical examination that confirmed this insidious and incurable disease, ALS. Since it is a complex disease, the condition of each patient is individual. Therefore, we did not give up and searched for various other options around the world. As with any disease, ALS does not choose its patients. Dad has been actively doing sports all his life. He was involved in several sports, especially football. Dad´s condition has got worse rapidly over the past year. He is almost dependent on our all-day care. He is not capable of doing normal daily activities that a healthy person takes for granted. Gradually, he is losing muscles in his entire body. He can no longer control his hands, needs walking assistance and his speech is already incomprehensible. It is very difficult for us, the closest ones, to manage this situation and see how he suffers. ALS patients are said to be prisoners in their own body.
More about ALS: https://alsnewstoday.com/what-is-als/
Since the only available drug in Slovakia – Radicut had side effects for our dad, we had to search for help abroad and get infusion treatment Edavarone, which we fully pay ourselves as our insurance company, Dôvera, refuses to reimburse it.
We are three sisters and we are all big fighters thanks to our both parents. We do not give up on this and together with our dad we have been fighting against this yet incurable disease for four years but we have reached a stage where we are no longer able to cope financially with next treatments alone. That´s why we have decided to ask for your help. We are all humans and humanity is about helping each other. Thank you in advance for your donation and any other help. We will do everything possible to keep our dad with us as long as possible.
We are in touch with the clinic in Mexico, who deals with stem cell treatment. The treatment alone will cost us $ 18,000. We are also in touch with Martina B. ,who has recently returned from Mexico with her boyfriend and we are thankful for her support.
We would also like to continue with infusion treatment Edavarone which maintenance dose for 30 days costs € 7,300.
To improve the quality of our dad’s life, we would like to purchase a special wheelchair, HeadUp collar to support the stability of his head and neck and a speech generating device.
Thanks to everyone who will help us to continue our fight.
Kornelia and Viktoria
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig´s disease, is a progressive, neurodegenerative brain disease that results in degeneration and loss of cerebral and spinal motoneurons, the cells of central nervous system that control voluntary muscular movements. This leads to a gradual muscle weakness and atrophy. At the beginning, this disease weakens only the muscles, later it affects fine motor skills, forearms and whole hands. Patients stop walking, control face muscles and are completely paralyzed. At an advanced stage, patients receive special nutritional diet and use lung ventilation. They also need 24-hour care.
It all started 4 years ago when we noticed an unusual muscle loss in our dad´s left arm and he started to have problems with articulation. This was followed by a medical examination that confirmed this insidious and incurable disease, ALS. Since it is a complex disease, the condition of each patient is individual. Therefore, we did not give up and searched for various other options around the world. As with any disease, ALS does not choose its patients. Dad has been actively doing sports all his life. He was involved in several sports, especially football. Dad´s condition has got worse rapidly over the past year. He is almost dependent on our all-day care. He is not capable of doing normal daily activities that a healthy person takes for granted. Gradually, he is losing muscles in his entire body. He can no longer control his hands, needs walking assistance and his speech is already incomprehensible. It is very difficult for us, the closest ones, to manage this situation and see how he suffers. ALS patients are said to be prisoners in their own body.
More about ALS: https://alsnewstoday.com/what-is-als/
Since the only available drug in Slovakia – Radicut had side effects for our dad, we had to search for help abroad and get infusion treatment Edavarone, which we fully pay ourselves as our insurance company, Dôvera, refuses to reimburse it.
We are three sisters and we are all big fighters thanks to our both parents. We do not give up on this and together with our dad we have been fighting against this yet incurable disease for four years but we have reached a stage where we are no longer able to cope financially with next treatments alone. That´s why we have decided to ask for your help. We are all humans and humanity is about helping each other. Thank you in advance for your donation and any other help. We will do everything possible to keep our dad with us as long as possible.
We are in touch with the clinic in Mexico, who deals with stem cell treatment. The treatment alone will cost us $ 18,000. We are also in touch with Martina B. ,who has recently returned from Mexico with her boyfriend and we are thankful for her support.
We would also like to continue with infusion treatment Edavarone which maintenance dose for 30 days costs € 7,300.
To improve the quality of our dad’s life, we would like to purchase a special wheelchair, HeadUp collar to support the stability of his head and neck and a speech generating device.
Thanks to everyone who will help us to continue our fight.
Kornelia and Viktoria
Organizer
Kornelia Drotarovska
Organizer