Unfortunately, the worst case scenario happened to us. The result of the genetic test was received on March 31, 2017 in which the doctors diagnosed SMA type 1 disease. SMA stands for spinal muscular atrophy, in other words, spinal chord malnutrition which cannot support life. In 80% of cases, children diagnosed with SMA 1 do not live to the age of one. Luckily, Ábris’s immune system is extremely strong and so far, none of the symptoms have occured.
The only treatment for the disease is a medicine called Spinraza, which was authorized in the US in 2016. Spinraza has been tested on patients in several clinical experiments, and it seems capable of keeping the child alive as well as improving their quality of life.
Negotiations are currently being held in Europe on the authorization of this medicine. It has been tested in Germany, but Spinraza has sadly not yet reached Hungary. It would be amazing if we had this medicine here, but for now the US is the only sure place with access to it.
According to a recently published data, one injection costs approximately 125.000 dollars. It is impossible to pull the money for it out of nowhere.
The establishment of a foundation for Abris is pending. It is a time-consuming procedure and in the best case scenario, it can operate legally within a few months. Until then, we have opened a bank account to which we are saving all the money we can in these pressing times.
Thank you for listening to our story. Donations of any amount will mean the world to our family, and most importantly Abris.