Hope for little Oli -Hoffnung für Oli midOfMay2020
Donation protected
English/Deutsch: Hello, my name is Oliver, I am 1,5 year old boy and I love to smile :), but sometimes it is really hard, because my parents´ eyes are very often sad, even they try very hard to look happy. I was born with Spinal muscular atrophy (SMA).
Hallo mein Name ist Oliver und ich bin 1,5 Jahre alt und ich liebe es zu lachen :) es ist oft schwer für mich, denn ich blicke oft in sehr traurigen Augen meiner Eltern, auch wenn sie sich immer anstrengend glück zu sein. Ich wurde leider mit Spinal muscular atrophy (SMA) geboren.
During the first year of my life, I had two severe pneumonia and one breathing failure, when my parents really just managed to get me to the hospital. Together, my mom and I spent almost 5 months in 4 different hospitals. After the first pneumonia, the doctors made me a tracheostomy, and after the second pneumonia, I ended up tied to my home ventilation, which I still have, almost 24 hours a day.
At the same time, we started treatment with Spinraza last year. This treatment is only maintenance and is intended to slow or stop the worsening of the disease and helps some children to improve. Unfortunately, after hospitalization and inflammation, I am so ill that thanks to Spinraza I am not getting worse, but my breathing or movements are not significantly improved and I risk spinal cord damage with every application.
Otherwise, I am a clever, bright, smiling and curious boy, fortunately SMA does not affect my thinking and my intelligence, but I am basically still lying baby and I can only move my left hand on my forearm. Also, when I'm angry, I can bang her with her to show everyone that I'm angry. I can't talk because of tracheostomy, I can't laugh out loud or even cry, but if I want to, I can hum and chatter and I like it when my mom puts me in bed and goes to bed. I can even sing for hours!
Last year, there was a new hope in the US for children like me, gene therapy. This treatment has wonderful results in children with SMA. Only a few years ago I would have had a maximum of two years of my life. Check results of this new treatment for example here: https://www.youtube.com/watch?v=yRrqbvUv6gQ
Unfortunately, this treatment is still not approved in the EU and should be approved next year. The problem is that the treatment is ONLY FOR CHILDREN UP TO 2 YEARS. This means I don't have much time left and my parents have only 5 months to get enough money (2 million Euros) to pay for the treatment themselves before being approved in Europe and before my time runs out and nothing can be done .
But that is not what my parents and grandmothers and aunts have, and we need the help of other good people.
I hate to ask you, but would you be willing to spare something little for me?
PS: If any money will be collected, the exact amount will be sent to transparent account created already for me in Czech republic - this is where I come from :)... you can find the account on my pages: https://www.facebook.com/Oliverkovy-cesty-s-SMA-1324379987728925/?tn-str=k*F or
https://www.nadejeprooliho.cz/
About payment for your information: there is a little fee on your donations: Transaction (2.9% + 0.25)*: VAT included.
NOTE: the Zolgensma treatment costs 2000000 ,- Euro -> there are already good souls collecting money for me as I noted above, in case we gather some money here too, all will go to my transparent account and I will keep you informed. THANK YOU!!!
Hallo mein Name ist Oliver und ich bin 1,5 Jahre alt und ich liebe es zu lachen :) es ist oft schwer für mich, denn ich blicke oft in sehr traurigen Augen meiner Eltern, auch wenn sie sich immer anstrengend glück zu sein. Ich wurde leider mit Spinal muscular atrophy (SMA) geboren.
During the first year of my life, I had two severe pneumonia and one breathing failure, when my parents really just managed to get me to the hospital. Together, my mom and I spent almost 5 months in 4 different hospitals. After the first pneumonia, the doctors made me a tracheostomy, and after the second pneumonia, I ended up tied to my home ventilation, which I still have, almost 24 hours a day.
At the same time, we started treatment with Spinraza last year. This treatment is only maintenance and is intended to slow or stop the worsening of the disease and helps some children to improve. Unfortunately, after hospitalization and inflammation, I am so ill that thanks to Spinraza I am not getting worse, but my breathing or movements are not significantly improved and I risk spinal cord damage with every application.
Otherwise, I am a clever, bright, smiling and curious boy, fortunately SMA does not affect my thinking and my intelligence, but I am basically still lying baby and I can only move my left hand on my forearm. Also, when I'm angry, I can bang her with her to show everyone that I'm angry. I can't talk because of tracheostomy, I can't laugh out loud or even cry, but if I want to, I can hum and chatter and I like it when my mom puts me in bed and goes to bed. I can even sing for hours!
Last year, there was a new hope in the US for children like me, gene therapy. This treatment has wonderful results in children with SMA. Only a few years ago I would have had a maximum of two years of my life. Check results of this new treatment for example here: https://www.youtube.com/watch?v=yRrqbvUv6gQ
Unfortunately, this treatment is still not approved in the EU and should be approved next year. The problem is that the treatment is ONLY FOR CHILDREN UP TO 2 YEARS. This means I don't have much time left and my parents have only 5 months to get enough money (2 million Euros) to pay for the treatment themselves before being approved in Europe and before my time runs out and nothing can be done .
But that is not what my parents and grandmothers and aunts have, and we need the help of other good people.
I hate to ask you, but would you be willing to spare something little for me?
PS: If any money will be collected, the exact amount will be sent to transparent account created already for me in Czech republic - this is where I come from :)... you can find the account on my pages: https://www.facebook.com/Oliverkovy-cesty-s-SMA-1324379987728925/?tn-str=k*F or
https://www.nadejeprooliho.cz/
About payment for your information: there is a little fee on your donations: Transaction (2.9% + 0.25)*: VAT included.
NOTE: the Zolgensma treatment costs 2000000 ,- Euro -> there are already good souls collecting money for me as I noted above, in case we gather some money here too, all will go to my transparent account and I will keep you informed. THANK YOU!!!
Organizer
Eva Glasbrenner
Organizer
Wendlingen
