Lilanie Visser

Good day Baby Lilanie was diagnosed with Spinal Muscular Atrophy type 2. To give a short description of this disorder, she has no SMN1 gene this gene helps send signals to all nerves and helps muscle growth, and get stronger, she needs treatment to slow down progression. The following treatments is available according to Neoroligists 
Evrysdi
At a weight of 15.4kg (over two years), the recommended dosage is 0.25mg/kg. This translates to a monthly requirement of 2 bottles (80ml) and 24 bottles per year. Each bottle, priced at R136,846.66 (including VAT), results in an annual cost of R3,284,319.84. 

Please note that the cost of Evrysdi is capped at 30 bottles per year for patients weighing 20kg and above.

The second option for treatment is Spinraza. This is not available locally but can be brought in. The cost is currently 940 000 euros per vial. (roughly 1,8 million rand). She would need 4 vials as initiation and then 3 vials per year.

The third option is Zolgenzyme. This is currently priced at 2,1 million USD once off.

Currently Lila...