Dear Biogen company, please give Roham an opportunity to live life by providing Spinraza.
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8 month old Roham ( Mohammad Reza) Hosseini is inflicted with Spinal Muscular Atrophy (SMA) type 1. The only medication that can save his life is Spinraza, the century's most expensive drug, which costs $750,000!! Roham is now hospitalized in Iran. Biogen company which markets Spinraza does not have any connection or contract with Iranian ministry of health at this moment.
Roham deserves to be given a chance to live more days and years. Roham deserve compassionate use of Spinraza. Please give him a chance to buy the medicine in a lower price. It's not fair that he loses the critical time for treatment at this young age.
The company does not even sell the set of 6 portions of the medicine separately. This baby is in dire need of the medicine. He deserves treatment. Nothing else can be done for him.There are campaigns to raise money for this little baby boy in Iran and outside Iran through gofundme.
Dear Biogen company, please gift Roham some compassionate use of the medication or lower prices before it is too late. Please cooperate with this family and support them to start their treatment as soon as possible. No kid in this world deserves to be left to gradually or eventually die.
Please help us in this.
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