4 doses of Spinraza only

Hi! I am Tímea Tóth from Hungary, 42 years old, living with SMA,  type two. 

Do you have enough information and half-information about SMA and possible treatments and cures? Yes? Do you believe that? Then I'll complicate the picture with another possible path.

The road is rough but not impassable. A Swiss 32-year-old girl in a worse condition than me, who was also rejected by her own health insurance, had already gone through it.

There is a drug, Risdiplam from Roche that is less well-known and still under development. It is tested up to the age of 60, including many places throughout Europe. (Https://clinicaltrials.gov/ct2/show/NCT03032172)

There is only one condition that I, as a 42-year-old, currently do not meet: 4 doses of Spinraza must be in the person. Only 4 doses! No 6, no 3 yearly thereafter, until the end of my life, only a total of 4. After that I don't have to pay for participating in the experiment and so far the new drug seems to be more effective than Spinraza.

This Swiss girl  managed to raise money and was able to buy medicine. Her spine is also surgically operated, but the doctor who did the operation on my back also resolved the administration in Zurich.

The cost of one dose, including administration, hospital, anesthesia, all is CHF 97,000. In other words, the 4 doses are about 120 million HUF. (~ 360 000 Euro.)

It's a tremendous expensive road, I know, but maybe not unpayable. Will you be my travel companion?

If yes:

Account number: HU85117730780650655900000000 (Tóth Tímea)

Paypal: tttimi [at] gmail.com