Time is running out as a whole nation is trying to save the life of little Zente, a one year old child suffering from a severe genetic disorder, called SMA ( spiral cord muscle atrophy). There is a medical treatment that can save his life: in May 2019 a new drug was approved by the FDA called Zolgensma. It cures SMA until the age of 2. There is only one problem: the price. It costs 2.1 million US dollars, it is the most expensive drug in the world.
The little boy, Zente was born on the 28th of February 2018 with a severe genetic disorder, called SMA ( spiral cord muscle atrophy). He started to show signs of the disease at 4 months of age, and was diagnosed at 5 months of age with SMA type 1.
With this diagnosis, children will not survive beyond age 2, because muscular atrophy not only affects the muscles of the limbs, but also the muscles needed for swallowing and breathing!
Zente, on the other hand, is an exceptionally strong baby, despite of the disease. He is fighting against muscle wasting with a help of a special treatment called Spinraza. He is getting this since 7 months of age. Each injection is given into the spinal cord after lumbar admisintration. So far, Zente has been through 6 – painful – treatments.
In this short video you can have an insight into his little life.
“Zente is our life! This short film is a window into our lives. Come and look through the window for a few minutes and if you can, please help us!”
Hungary is on the move, the generous people of this country of less, than 10 million inhabitants already have put together more, than 1.7 million dollars, in less than a month. Less, than the third of the money is missing yet, as the family is getting closer to save the life of their precious one.
We at S4C think that there is no greater gift than the life we received from our Creator. I think we have proven that many times with our articles.
Now we would like to use our news service as a platform, asking the generous donations of all those, who think this is a cause worth donating for. Please listen to your heart and donate, here are all the necessary data you need to know:
The Foundation:
Összefogás Zentéért Alapítvány (OTP Bank Magyarország)
International account number: HU06117310012312017800000000
SWIFT/BIC: OTPVHUHB
GoFundMe(Budafoki Mira):
https://www.gofundme.com/f/help-zente-to-live-a-long-carefr…
Gofundme (Balázsi Renáta):
https://www.gofundme.com/f/23kcu-medicine…
PayPal:
https://www.paypal.me/OsszefogasZenteert
Update: Zente’s mother posted on FB this morning that they reached their goal! In case more donations would flow in, they can use it for Zente’s rehabilitation, but the medicine’s price is already on their account. Thanks for all your generosity!
